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December 22, 2020

2020 Research Highlights — Promising Medical Findings

Results with potential for enhancing human health.

With NIH support, scientists across the United States and around the world conduct wide-ranging research to discover ways to enhance health, lengthen life, and reduce illness and disability. Groundbreaking NIH-funded research often receives top scientific honors. In 2020, these honors included one of NIH’s own scientists and another NIH-supported scientist who received Nobel Prizes . Here’s just a small sample of the NIH-supported research accomplishments in 2020.

Full 2020 NIH Research Highlights List

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New approaches to COVID-19

As the global pandemic unfolded, researchers worked at unprecedented speed to develop new treatments and vaccines. Scientists  studied antibodies from the blood of people who recovered from COVID-19 and identified potent, diverse ones that neutralize SARS-CoV-2 . Some antibody treatments have now been given emergency use authorization by the FDA, with many others in development . However, such antibodies—called monoclonal antibodies—are difficult to produce and must be given intravenously. NIH-researchers have been pursuing other approaches, including using antibodies from llamas , which are only about a quarter of the size of a typical human antibody and could be delivered directly to the lungs using an inhaler. Computer-designed “miniproteins” and other antiviral compounds are also under investigation.

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Universal mosquito vaccine tested

Most mosquito bites are harmless. But some mosquitoes carry pathogens, like bacteria and viruses, that can be deadly. A small trial showed that a vaccine against mosquito saliva—designed to provide broad protection against mosquito-borne diseases—is safe and causes a strong immune response in healthy volunteers. More studies are needed to test its effectiveness against specific diseases.

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Machine learning detects early signs of osteoarthritis

Osteoarthritis is the most common type of arthritis. It results when cartilage, the tissue that cushions the ends of the bones, breaks down. People with osteoarthritis can have joint pain, stiffness, and swelling. Some develop serious pain and disability from the disease. Using artificial intelligence and MRI scans, scientists identified signs of osteoarthritis three years before diagnosis. The results suggest a way to identify people who may benefit from early interventions.

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Advances in restoring vision

Several common eye diseases, such as age-related macular degeneration and retinitis pigmentosa, damage the retina, the light-sensitive tissue in the eye. They can eventually lead to vision loss. Two studies looked at ways to restore vision in mouse models. Researchers reprogrammed skin cells into light-sensing eye cells that restored sight in mice. The technique may lead to new approaches for modeling and treating eye diseases. Other scientists restored vision in blind mice by using gene therapy to add a novel light-sensing protein to cells in the retina. The therapy will soon be tested in people.

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Blood protein signatures change across lifespan

The bloodstream touches all the tissues of the body. Because of the constant flow of proteins through the body, some blood tests measure specific proteins to help diagnose diseases. Researchers determined that the levels of nearly 400 proteins in the blood can be used to determine people’s age and relative health. More research is needed to understand if these protein signatures could help identify people at greater risk of age-related diseases.

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Understanding HIV’s molecular mechanisms

More than a million people nationwide are living with HIV, the virus that causes AIDS. HIV attacks the immune system by destroying immune cells vital for fighting infection. Researchers uncovered key steps in HIV replication by reconstituting and watching events unfold outside the cell. The system may be useful for future studies of these early stages in the HIV life cycle. In other work, experimental treatments in animal models of HIV led to the viruses emerging from their hiding places inside certain cells—a first step needed to make HIV vulnerable to the immune system.

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Test distinguishes Parkinson’s disease from related condition

A protein called alpha-synuclein plays a major role in Parkinson’s disease as well as other brain disorders. Early symptoms of Parkinson’s disease and another disease involving alpha-synuclein, multiple system atrophy, can be similar. Researchers created a test using cerebrospinal fluid that can distinguish between these two diseases with 95% accuracy. The results have implications for the early diagnosis and treatment of these conditions and may help in the development of new targeted therapies.

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Understanding allergic reactions to skin care products

Personal care products like makeup, skin cream, and fragrances commonly cause rashes called allergic contact dermatitis. It’s not well understood how chemical compounds in personal care products trigger such allergic reactions. Scientists gained new insight into how personal care products may cause immune responses that lead to allergic responses in some people. Understanding how compounds in these products trigger immune reactions could lead to new ways to prevent or treat allergic contact dermatitis.

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The 10 Most Significant Education Studies of 2020

We reviewed hundreds of educational studies in 2020 and then highlighted 10 of the most significant—covering topics from virtual learning to the reading wars and the decline of standardized tests.

In the month of March of 2020, the year suddenly became a whirlwind. With a pandemic disrupting life across the entire globe, teachers scrambled to transform their physical classrooms into virtual—or even hybrid—ones, and researchers slowly began to collect insights into what works, and what doesn’t, in online learning environments around the world.

Meanwhile, neuroscientists made a convincing case for keeping handwriting in schools, and after the closure of several coal-fired power plants in Chicago, researchers reported a drop in pediatric emergency room visits and fewer absences in schools, reminding us that questions of educational equity do not begin and end at the schoolhouse door.

1. To Teach Vocabulary, Let Kids Be Thespians

When students are learning a new language, ask them to act out vocabulary words. It’s fun to unleash a child’s inner thespian, of course, but a 2020 study concluded that it also nearly doubles their ability to remember the words months later.

Researchers asked 8-year-old students to listen to words in another language and then use their hands and bodies to mimic the words—spreading their arms and pretending to fly, for example, when learning the German word flugzeug , which means “airplane.” After two months, these young actors were a remarkable 73 percent more likely to remember the new words than students who had listened without accompanying gestures. Researchers discovered similar, if slightly less dramatic, results when students looked at pictures while listening to the corresponding vocabulary. 

It’s a simple reminder that if you want students to remember something, encourage them to learn it in a variety of ways—by drawing it , acting it out, or pairing it with relevant images , for example.

2. Neuroscientists Defend the Value of Teaching Handwriting—Again

For most kids, typing just doesn’t cut it. In 2012, brain scans of preliterate children revealed crucial reading circuitry flickering to life when kids hand-printed letters and then tried to read them. The effect largely disappeared when the letters were typed or traced.

More recently, in 2020, a team of researchers studied older children—seventh graders—while they handwrote, drew, and typed words, and concluded that handwriting and drawing produced telltale neural tracings indicative of deeper learning.

“Whenever self-generated movements are included as a learning strategy, more of the brain gets stimulated,” the researchers explain, before echoing the 2012 study: “It also appears that the movements related to keyboard typing do not activate these networks the same way that drawing and handwriting do.”

It would be a mistake to replace typing with handwriting, though. All kids need to develop digital skills, and there’s evidence that technology helps children with dyslexia to overcome obstacles like note taking or illegible handwriting, ultimately freeing them to “use their time for all the things in which they are gifted,” says the Yale Center for Dyslexia and Creativity.

3. The ACT Test Just Got a Negative Score (Face Palm)

A 2020 study found that ACT test scores, which are often a key factor in college admissions, showed a weak—or even negative —relationship when it came to predicting how successful students would be in college. “There is little evidence that students will have more college success if they work to improve their ACT score,” the researchers explain, and students with very high ACT scores—but indifferent high school grades—often flamed out in college, overmatched by the rigors of a university’s academic schedule.

Just last year, the SAT—cousin to the ACT—had a similarly dubious public showing. In a major 2019 study of nearly 50,000 students led by researcher Brian Galla, and including Angela Duckworth, researchers found that high school grades were stronger predictors of four-year-college graduation than SAT scores.

The reason? Four-year high school grades, the researchers asserted, are a better indicator of crucial skills like perseverance, time management, and the ability to avoid distractions. It’s most likely those skills, in the end, that keep kids in college.

4. A Rubric Reduces Racial Grading Bias

A simple step might help undercut the pernicious effect of grading bias, a new study found: Articulate your standards clearly before you begin grading, and refer to the standards regularly during the assessment process.

In 2020, more than 1,500 teachers were recruited and asked to grade a writing sample from a fictional second-grade student. All of the sample stories were identical—but in one set, the student mentions a family member named Dashawn, while the other set references a sibling named Connor.

Teachers were 13 percent more likely to give the Connor papers a passing grade, revealing the invisible advantages that many students unknowingly benefit from. When grading criteria are vague, implicit stereotypes can insidiously “fill in the blanks,” explains the study’s author. But when teachers have an explicit set of criteria to evaluate the writing—asking whether the student “provides a well-elaborated recount of an event,” for example—the difference in grades is nearly eliminated.

5. What Do Coal-Fired Power Plants Have to Do With Learning? Plenty

When three coal-fired plants closed in the Chicago area, student absences in nearby schools dropped by 7 percent, a change largely driven by fewer emergency room visits for asthma-related problems. The stunning finding, published in a 2020 study from Duke and Penn State, underscores the role that often-overlooked environmental factors—like air quality, neighborhood crime, and noise pollution—have in keeping our children healthy and ready to learn.

At scale, the opportunity cost is staggering: About 2.3 million children in the United States still attend a public elementary or middle school located within 10 kilometers of a coal-fired plant.

The study builds on a growing body of research that reminds us that questions of educational equity do not begin and end at the schoolhouse door. What we call an achievement gap is often an equity gap, one that “takes root in the earliest years of children’s lives,” according to a 2017 study . We won’t have equal opportunity in our schools, the researchers admonish, until we are diligent about confronting inequality in our cities, our neighborhoods—and ultimately our own backyards.

6. Students Who Generate Good Questions Are Better Learners

Some of the most popular study strategies—highlighting passages, rereading notes, and underlining key sentences—are also among the least effective. A 2020 study highlighted a powerful alternative: Get students to generate questions about their learning, and gradually press them to ask more probing questions.

In the study, students who studied a topic and then generated their own questions scored an average of 14 percentage points higher on a test than students who used passive strategies like studying their notes and rereading classroom material. Creating questions, the researchers found, not only encouraged students to think more deeply about the topic but also strengthened their ability to remember what they were studying.

There are many engaging ways to have students create highly productive questions : When creating a test, you can ask students to submit their own questions, or you can use the Jeopardy! game as a platform for student-created questions.

7. Did a 2020 Study Just End the ‘Reading Wars’?

One of the most widely used reading programs was dealt a severe blow when a panel of reading experts concluded that it “would be unlikely to lead to literacy success for all of America’s public schoolchildren.”

In the 2020 study , the experts found that the controversial program—called “Units of Study” and developed over the course of four decades by Lucy Calkins at the Teachers College Reading and Writing Project—failed to explicitly and systematically teach young readers how to decode and encode written words, and was thus “in direct opposition to an enormous body of settled research.”

The study sounded the death knell for practices that de-emphasize phonics in favor of having children use multiple sources of information—like story events or illustrations—to predict the meaning of unfamiliar words, an approach often associated with “balanced literacy.” In an internal memo obtained by publisher APM, Calkins seemed to concede the point, writing that “aspects of balanced literacy need some ‘rebalancing.’”

8. A Secret to High-Performing Virtual Classrooms

In 2020, a team at Georgia State University compiled a report on virtual learning best practices. While evidence in the field is "sparse" and "inconsistent," the report noted that logistical issues like accessing materials—and not content-specific problems like failures of comprehension—were often among the most significant obstacles to online learning. It wasn’t that students didn’t understand photosynthesis in a virtual setting, in other words—it was that they didn’t find (or simply didn't access) the lesson on photosynthesis at all.

That basic insight echoed a 2019 study that highlighted the crucial need to organize virtual classrooms even more intentionally than physical ones. Remote teachers should use a single, dedicated hub for important documents like assignments; simplify communications and reminders by using one channel like email or text; and reduce visual clutter like hard-to-read fonts and unnecessary decorations throughout their virtual spaces.

Because the tools are new to everyone, regular feedback on topics like accessibility and ease of use is crucial. Teachers should post simple surveys asking questions like “Have you encountered any technical issues?” and “Can you easily locate your assignments?” to ensure that students experience a smooth-running virtual learning space.

9. Love to Learn Languages? Surprisingly, Coding May Be Right for You

Learning how to code more closely resembles learning a language such as Chinese or Spanish than learning math, a 2020 study found—upending the conventional wisdom about what makes a good programmer.

In the study, young adults with no programming experience were asked to learn Python, a popular programming language; they then took a series of tests assessing their problem-solving, math, and language skills. The researchers discovered that mathematical skill accounted for only 2 percent of a person’s ability to learn how to code, while language skills were almost nine times more predictive, accounting for 17 percent of learning ability.

That’s an important insight because all too often, programming classes require that students pass advanced math courses—a hurdle that needlessly excludes students with untapped promise, the researchers claim.

10. Researchers Cast Doubt on Reading Tasks Like ‘Finding the Main Idea’

“Content is comprehension,” declared a 2020 Fordham Institute study , sounding a note of defiance as it staked out a position in the ongoing debate over the teaching of intrinsic reading skills versus the teaching of content knowledge.

While elementary students spend an enormous amount of time working on skills like “finding the main idea” and “summarizing”—tasks born of the belief that reading is a discrete and trainable ability that transfers seamlessly across content areas—these young readers aren’t experiencing “the additional reading gains that well-intentioned educators hoped for,” the study concluded.

So what works? The researchers looked at data from more than 18,000 K–5 students, focusing on the time spent in subject areas like math, social studies, and ELA, and found that “social studies is the only subject with a clear, positive, and statistically significant effect on reading improvement.” In effect, exposing kids to rich content in civics, history, and law appeared to teach reading more effectively than our current methods of teaching reading. Perhaps defiance is no longer needed: Fordham’s conclusions are rapidly becoming conventional wisdom—and they extend beyond the limited claim of reading social studies texts. According to Natalie Wexler, the author of the well-received 2019 book  The Knowledge Gap , content knowledge and reading are intertwined. “Students with more [background] knowledge have a better chance of understanding whatever text they encounter. They’re able to retrieve more information about the topic from long-term memory, leaving more space in working memory for comprehension,” she recently told Edutopia .

The top 10 journal articles of 2020

In 2020, APA’s 89 journals published more than 5,000 articles—the most ever and 25% more than in 2019. Here’s a quick look at the 10 most downloaded to date.

Vol. 52 No. 1 Print version: page 24

1. Me, My Selfie, and I: The Relations Between Selfie Behaviors, Body Image, Self-Objectification, and Self-Esteem in Young Women

Veldhuis, j., et al..

Young women who appreciate their bodies and consider them physical objects are more likely to select, edit, and post selfies to social media, suggests this study in Psychology of Popular Media (Vol. 9, No. 1). Researchers surveyed 179 women, ages 18 to 25, on how often they took selfies, how they selected selfies to post, how often they used filters and editing techniques, and how carefully they planned their selfie postings. They also assessed participants’ levels of body appreciation and dissatisfaction, self-objectification, and self-esteem. Higher levels of self-objectification were linked to more time spent on all selfie behaviors, while body appreciation was related to more time spent selecting selfies to post, but not frequency of taking or editing selfies. Body dissatisfaction and self-esteem were not associated with selfie behaviors. DOI: 10.1037/ppm0000206

2. A Closer Look at Appearance and Social Media: Measuring Activity, Self-Presentation, and Social Comparison and Their Associations With Emotional Adjustment

Zimmer-gembeck, m. j., et al..

This Psychology of Popular Media (online first publication) article presents a tool to assess young people’s preoccupation with their physical appearance on social media. Researchers administered a 21-item survey about social media to 281 Australian high school students. They identified 18 items with strong inter-item correlation centered on three categories of social media behavior: online self-presentation, appearance-related online activity, and appearance comparison. In a second study with 327 Australian university students, scores on the 18-item survey were found to be associated with measures of social anxiety and depressive symptoms, appearance-related support from others, general interpersonal stress, coping flexibility, sexual harassment, disordered eating, and other factors. The researchers also found that young women engaged in more appearance-related social media activity and appearance comparison than did young men. DOI: 10.1037/ppm0000277

3. The Novel Coronavirus (COVID-2019) Outbreak: Amplification of Public Health Consequences by Media Exposure

Garfin, d. r., et al..

Repeated media exposure to the COVID-19 pandemic may be associated with psychological distress and other public health consequences, according to this commentary in Health Psychology (Vol. 39, No. 5). The authors reviewed research about trends in health behavior and psychological distress as a response to media coverage of crises, including terrorist attacks, school shootings, and disease outbreaks. They found that repeated media exposure to collective crises was associated with increased anxiety and heightened acute and post-traumatic stress, with downstream effects on health outcomes such as new incidence of cardiovascular disease. Moreover, misinformation can further amplify stress responses and lead to misplaced or misguided health-protective and help-seeking behaviors. The authors recommended public health agencies use social media strategically, such as with hashtags, to keep residents updated during the pandemic. They also urged the public to avoid sensationalism and repeated coverage of the same information. DOI: 10.1037/hea0000875

4. Barriers to Mental Health Treatment Among Individuals With Social Anxiety Disorder and Generalized Anxiety Disorder

Goetter, e. m., et al..

This study in Psychological Services (Vol. 17, No. 1) indicates that 3 in 4 people who suffer from anxiety do not receive proper care. Researchers recruited 226 participants in the United States who were previously diagnosed with social anxiety disorder or generalized anxiety disorder and assessed their symptom severity and asked them to self-report any barriers to treatment. Shame and stigma were the highest cited barriers, followed by logistical and financial barriers and not knowing where to seek treatment. Participants with more severe symptoms reported more barriers to treatment than those with milder symptoms. Racial and ethnic minorities reported more barriers than racial and ethnic majorities even after controlling for symptom severity. The researchers called for increased patient education and more culturally sensitive outreach to reduce treatment barriers. DOI: 10.1037/ser0000254

5. The Construction of “Critical Thinking”: Between How We Think and What We Believe

This History of Psychology (Vol. 23, No. 3) article examines the emergence of “critical thinking” as a psychological concept. The author describes how, between World War I and World War II in the United States, the concept emerged out of growing concerns about how easily people’s beliefs could be changed and was constructed in a way that was independent of what people believed. The author delves into how original measurements of critical thinking avoided assumptions about the accuracy of specific real-world beliefs and details how subsequent critical thinking tests increasingly focused on logical abilities, often favoring outcome (what we believe) over process (how we think). DOI: 10.1037/hop0000145

6. Treatment of Alcohol Use Disorder: Integration of Alcoholics Anonymous and Cognitive Behavioral Therapy

Breuninger, m. m., et al..

This article in Training and Education in Professional Psychology (Vol. 14, No. 1) details how to work with alcohol use disorder patients who are participating in both cognitive behavioral therapy (CBT) and Alcoholics Anonymous (AA). The authors point to distinctions between AA and CBT: The goal of AA is total abstinence and the primary therapeutic relationship is with a peer in recovery, while CBT takes a less absolute approach and the primary relationship is with a psychotherapist. The authors also point to commonalities: both approaches emphasize identifying and replacing dysfunctional beliefs and place value in social support. The authors recommend clinicians and trainees become more educated about AA and recommend a translation of the 12-step language into CBT terminology to bridge the gap. DOI: 10.1037/tep0000265

7. Positivity Pays Off: Clients’ Perspectives on Positive Compared With Traditional Cognitive Behavioral Therapy for Depression

Geschwind, n., et al..

Positive cognitive behavioral therapy, a version of CBT focused on exploring exceptions to the problem rather than the problem itself, personal strengths, and embracing positivity, works well to counter depressive symptoms and build well-being, according to this study in Psychotherapy (Vol. 57, No. 3). Participants received a block of eight sessions of traditional CBT and a block of eight sessions of positive CBT. Researchers held in-depth interviews with 12 of these participants. Despite initial skepticism, most participants reported preferring positive CBT but indicated experiencing a steeper learning curve than with traditional CBT. Researchers attributed positive CBT’s favorability to four factors: feeling empowered, benefiting from effects of positive emotions, learning to appreciate baby steps, and rediscovering optimism as a personal strength. DOI: 10.1037/pst0000288

8. Targeted Prescription of Cognitive-Behavioral Therapy Versus Person-Centered Counseling for Depression Using a Machine Learning Approach

Delgadillo, j., & gonzalez salas duhne, p..

Amachine learning algorithm can identify which patients would derive more benefit from cognitive behavioral therapy (CBT) versus counseling for depression, suggests research in this Journal of Consulting and Clinical Psychology (Vol. 88, No. 1) article. Researchers retrospectively explored data from 1,085 patients in the United Kingdom treated with either CBT or counseling for depression and discovered six patient characteristics—age, employment status, disability, and three diagnostic measures of major depression and social adjustment—relevant to developing an algorithm for prescribing the best approach. The researchers then used the algorithm to determine which therapy would work best for an additional 350 patients with depression. They found that patients receiving their optimal treatment type were twice as likely to improve significantly. DOI: 10.1037/ccp0000476

9. Traumatic Stress in the Age of COVID-19: A Call to Close Critical Gaps and Adapt to New Realities

Horesh, d., & brown, a. d..

This article in Psychological Trauma: Theory, Research, Practice, and Policy (Vol. 12, No. 4) argues that COVID-19 should be examined from a post-traumatic stress perspective. The authors call for mental health researchers and clinicians to develop better diagnoses and prevention strategies for COVID-related traumatic stress; create guidelines and talking points for the media and government officials to use when speaking to an anxious, and potentially traumatized, public; and provide mental health training to professionals in health care, education, childcare, and occupational support in order to reach more people. DOI: 10.1037/tra0000592

10. Emotional Intelligence Predicts Academic Performance: A Meta-Analysis

Maccann, c., et al..

Students with high emotional intelligence get better grades and score higher on standardized tests, according to the research presented in this article in Psychological Bulletin (Vol. 146, No. 2). Researchers analyzed data from 158 studies representing more than 42,529 students—ranging in age from elementary school to college—from 27 countries. The researchers found that students with higher emotional intelligence earned better grades and scored higher on achievement tests than those with lower emotional intelligence. This finding was true even when controlling for intelligence and personality factors, and the association held regardless of age. The researchers suggest that students with higher emotional intelligence succeed because they cope well with negative emotions that can harm academic performance; they form stronger relationships with teachers, peers, and family; and their knowledge of human motivations and socialinteractions helps them understand humanities subject matter. DOI: 10.1037/bul0000219

5 interviews to listen to now

Psychology’s most innovative thinkers are featured on APA’s Speaking of Psychology podcast , which highlights important research and helps listeners apply psychology to their lives. The most popular episodes of 2020, as measured by the number of downloads in the first 30 days, were: 

• How to have meaningful dialogues despite political differences , with  Tania Israel, PhD
• Canine cognition and the survival of the friendliest , with  Brian Hare, PhD  
• The challenges faced by women in leadership , with  Alice Eagly, PhD
• How to choose effective, science-based mental health apps , with  Stephen Schueller, PhD  
• Psychedelic therapy , with Roland Griffiths, PhD  

Listen to all of the Speaking of Psychology episodes .

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2020 year in review: Highlights from our publishing

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A tale of 2020 in 20 McKinsey charts

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McKinsey’s Private Markets Annual Review: 2017 to 2022

New features this year, we are mckinsey, the mckinsey crossword, mckinsey’s annual reading list, 2020 favorites from gen z colleagues, new experiences this year, what now decisive actions to emerge stronger in the next normal, mckinsey for kids, do you know your life’s purpose, popular special collections this year.

The Next Normal: Emerging stronger from the coronavirus pandemic

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McKinsey on Books

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Popular podcasts this year.

In this year of lockdowns, listeners tuned in to reflect and learn—how to be more productive, more inclusive, and more resilient in the face of adversity. Here are some of our most streamed podcasts of 2020.

Listen to more McKinsey Podcasts

Uncovering the state of fashion

The future of air travel

The mass personalization of change: Large-scale impact, one individual at a time

Building a business within a business: How to power continual organic growth

Getting the measure of corporate Asia

Meet Generation Z: Shaping the future of shopping

Newsletters.

The editors of our four most-read email newsletters and multimedia series chose their favorite issues of the year to share with you. Whether daily, weekly, or monthly, our newsletter offerings span functional, industry, and news-based topics—and we’re adding more in 2021.

The Shortlist

The Next Normal

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Popular webinars from mckinsey live.

The COVID-19 pandemic has created and exacerbated countless challenges for leaders, organizations, and communities. In our most popular McKinsey Live webinars, McKinsey experts brought these issues to the forefront and offered perspectives on navigating beyond the crisis to shape the next normal.

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Acknowledgments.

McKinsey Global Publishing would like to thank, first and foremost, the many authors of these articles and other insights for their contributions and analysis.

And we want to acknowledge the many direct contributors who offered vital energy and expertise—under extraordinary personal and professional circumstances—to the development, editing, risk review, copyediting, fact checking, data visualization, design, production, and dissemination of all of McKinsey’s content over the past year.

McKinsey Global Publishing

Raju Narisetti

Global Editorial Director

Lucia Rahilly

Julia Arnous, Diane Brady, Richard Bucci, Lang Davison, Tom Fleming, Roberta Fusaro, Eileen Hannigan, Heather Hanselman, Justine Jablonska, Bill Javetski, Jason Li, Cait Murphy, Josh Rosenfield, Astrid Sandoval, David Schwartz, Daniella Seiler, Mark Staples, Rick Tetzeli, Barbara Tierney, and Monica Toriello

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Victor Cuevas, Nicole Esquerre, Richard Johnson, Maya Kaplun, Stephen Landau, Janet Michaud, Matthew Perry, Dan Redding, Jonathon Rivait, Dan Spector, and Nathan Wilson

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Michael Allen, Matt Baumer, Elana Brown, Andrew Cha, Paromita Ghosh, Gwyn Herbein, Chris Konnari, Milva Mantilla, Katrina Parker, Charmaine Rice, Dana Sand, Katie Shearer, Venetia Simcock, Chandan Srivastava, Sean Stebner, Sneha Vats, Pooja Yadav, and Belinda Yu

Social media/video

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What were the top research trends of 2020.

The most accessed dissertations reflect interest in health, technology, work and education throughout a tumultuous year

The global COVID-19 pandemic profoundly affected the ways all of us worked, learned and related in 2020. Many of our offices and classrooms were transitioned into our homes and online, and our connections with friends and family went virtually…well, virtual.

These issues and concerns also impacted the kinds of topics that interested students and researchers around the world. In looking at ProQuest’s most accessed dissertations and theses in 2020, we weren’t surprised to see most of the titles related to education, leadership, organizational management, technology and health care– or some combination thereof.

The top-most accessed title was Social Media and Self-Evaluation: The Examination of Social Media Use on Identity, Social Comparison, and Self-Esteem in Young Female Adults by Dr. Michelle Solomon (William James College). Given the increased amount of time spent on our devices and the reduction in person-to-person interaction over the past year, the influence of social media was more powerful than ever in our lives. Solomon’s study explores how engaging on these platforms impacts the ways we think about ourselves and others.

The second-most accessed title was Student Retention at the Community College: Meeting Students' Needs by Dr. Jill Jacobs-Biden (University of Delaware), US First Lady Elect. Along with concerns about the impact of COVID-19 on community colleges, curiosity about Dr. Biden’s research was likely stoked by viral backlash to a Wall Street Journal Op-Ed that criticized her use of the honorific.

Below is the complete list of most access doctoral dissertations from 2020. We suspect many of them will continue to be relevant in research and learning into this year.

• Social Media and Self-Evaluation: The Examination of Social Media Use on Identity, Social Comparison, and Self-Esteem in Young Female Adults Author: Solomon, Michelle Subject: Clinical Psychology Pubno: 10188962 
• Student Retention at the Community College: Meeting students' needs  Author:  Jacobs-Biden, Jill Subject: Community college education Pubno: 3247570
• Why Did You Stay?: A Case Study of Male Student Persistence in Technical College  Author:  Froehlich-Mueller, Kerry Subject: Community college education Pubno: 10680855
• A Correlational Study on Interactive Technology Use and Student Persistence In eLearning Classes at an Online University  Author:  Edwards, Carol T. Subject: Information Technology Pubno: 10641768
• Leadership Style and Leadership Education: A Phenomenological Study of Nurse Leader and Frontline Charge Nurse Perceptions of Leadership Style and Leadership Education in Hospitals Author:  Smith, Candace S. Subject: Educational Philosophy Pubno: 10690015
• How High School Students' Perceptions of Their Teacher-Student Relationships Relate to Their Academic Achievement  Author:  Short, Lori A. Subject: Secondary Education Pubno: 10638662
• Factors Influencing Customer Satisfaction at a Fast Food Hamburger Chain: The Relationship Between Customer Satisfaction and Customer Loyalty  Author:  Kabir, Jahangir M. Subject: Business Administration Pubno: 10169573
• Organizational Change Readiness: Effects of Organizational Structure and Leadership Communication in Organizational Change  Author:  Krishnan, Rajesh R. Subject: Management Pubno: 10791024
• Factors that Influence Successful Organizational Change in Corporations: Examination of Change Management, Employees' Reaction to Change, and Change Outcomes  Author:  Roberts, Augustus Dee Subject: Management Pubno: 10746805
• Content Analysis of the Theory Base Used in the Conference Proceedings of the Association of Educational Communications and Technologies  Author:  Flynt, Peggy R. Subject: Education Pubno: 10635947
• Social Media and the College Student Journey: An Examination of How Social Media Use Impacts Social Capital and Affects College Choice, Access, and Transition  Author:  Horvath-Plyman, Melissa Subject: Communication Pubno: 10937367
• Rage and Social Media: The Effect of Social Media on Perceptions of Racism, Stress Appraisal, and Anger Expression Among Young African American Adults  Author:  Maxwell, Morgan Lindsey Subject: Social Psychology Pubno: 10120165
• The Effects of Watson's Theory of Human Caring on the Nurse Perception and Utilization of Caring Attributes and the Impact on Nurse Communication  Author:  McMillan, Mary Owens Subject: Nursing Pubno: 10274624
• Organizational Behavior: Perceptions Analysis of Micro and Macro Organizational Behavior in an Organizational Setting  Author:  Delich, Joshua T. Subject: Organizational Behavior Pubno: 10075919
• Blended Technology Rich Instruction Verses Blended Computer Managed Instruction in 8th Grade Digital Literacy Instruction  Author:  Puccetti, Gregory Peter Subject: Educational Technology Pubno: 10149966
• Application of Jean Watson's Theory of Transpersonal Caring in Nurses Practicing in a Pain Center   Author:  Hubert, Patricia Malone Subject: Nursing Pubno: 10933489
• A Quantitative Study of Grit as a Predictor of Online Course Success at a Suburban Michigan Community College  Author:  Climer, Steven L. Subject: Higher Education Pubno: 10682242
• The K-12 Service-Learning Standards and Fourth Grade Students' Math Achievement: A Quasi-Experimental Study in Georgia  Author:  Clark, Tanner Subject: Elementary Education Pubno: 10743197
• Managing Marketing Mix and Communications in a Digital Era: The Role of Traditional and New Media in a Multichannel Environment  Author:  Kumar, Ashish Subject: Marketing Pubno: 3541126
• A Study of the Relationship Between Skill Variety and High Internal Work Motivation, Task Identity and High Internal Work Motivation, Task Significance and High Internal Work Motivation, Autonomy and High Internal Work Motivation, and Intrinsic Job Feedback and High Internal Work Motivation in the Manufacturing arena Author:  Robbins, Jay Thomas Subject: Management Pubno: 9968179
• An Assessment of Dropout Rates of Former Youth Ministry Participants in Conservative Southern Baptist Megachurches  Author:  Shields, James Brandon Subject: Social Sciences Education Pubno: 3356773
• Cognitive Effects on the Neurophysiology and Biomechanics of Stroke Recovery  Author:  Diamond, Solomon Gilbert Subject: Biomedical Engineering Pubno: 3117980
• Exploring Online Community Among Rural Medical Education Students: A Case Study  Author:  Palmer, Ryan Tyler Subject: Health Education Pubno: 3594744
• A Quantitative Study of the Relationship between Pre-Service and In-Service Teacher Violence Training to Reduce Stress and Attrition  Author: Tucker, Angela Subject: Teacher Education Pubno: 10746978
• Implications of a Social Media Course for Adolescent Social Media Usage Author: Johnson, Nneka A. Subject: Education Pubno: 10261934

See the full list of most accessed dissertations and theses per month in 2020!

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Original research

Nih funding of covid-19 research in 2020: a cross-sectional study, logesvar balaguru.

1 Department of Surgery, Johns Hopkins Medicine School of Medicine, Baltimore, Maryland, USA

Andrea Meyer

2 The Pennsylvania State University College of Medicine, Hershey, Pennsylvania, USA

Sanuri Hennayake

Christi walsh, christopher kung, brittany cary.

3 MedStar Washington Hospital Center, Washington, District of Columbia, USA

Frank Migliarese

Tinglong dai.

4 Johns Hopkins University Carey Business School, Baltimore, Maryland, USA

5 Health Policy and Management, Johns Hopkins University Bloomberg School of Public Health, Baltimore, Maryland, USA

Kathleen Sutcliffe

6 Department of Anesthesia and Critical Care Medicine, Johns Hopkins University, Baltimore, Maryland, USA

7 School of Nursing, Johns Hopkins University, Baltimore, Maryland, USA

Martin Makary

Associated data.

bmjopen-2021-059041supp001.pdf

Data are available in a public, open access repository. Data are publicly available.

This study aims to characterise and evaluate the National Institutes of Health’s (NIH’s) grant allocation speed and pattern of COVID-19 research.

Cross-sectional study.

COVID-19 NIH RePORTER Dataset was used to identify COVID-19 relevant grants.

Participants

1108 grants allocated to COVID-19 research.

Main outcomes and measures

The primary outcome was to determine the number of grants and funding amount the NIH allocated for COVID-19 by research type and clinical/scientific area. The secondary outcome was to calculate the time from the funding opportunity announcement to the award notice date.

The NIH awarded a total of 56 169 grants in 2020, of which 2.0% (n=1108) wwas allocated for COVID-19 research. The NIH had a US$45.3 billion budget that year, of which 4.9% (US$2.2 billion) was allocated to COVID-19 research. The most common clinical/scientific areas were social determinants of health (n=278, 8.5% of COVID-19 funding), immunology (n=211, 25.8%) and pharmaceutical interventions research (n=208, 47.6%). There were 104 grants studying COVID-19 non-pharmaceutical interventions, of which 2 grants studied the efficacy of face masks and 6 studied the efficacy of social distancing. Of the 83 COVID-19 funded grants on transmission, 5 were awarded to study airborne transmission of COVID-19 and 2 grants on transmission of COVID-19 in schools. The average time from the funding opportunity announcement to the award notice date was 151 days (SD: ±57.9).

In the first year of the pandemic, the NIH diverted a small fraction of its budget to COVID-19 research. Future health emergencies will require research funding to pivot in a timely fashion and funding levels to be proportional to the anticipated burden of disease in the population.

Strengths and limitations of this study

• Our study is the first study to characterise and evaluate the National Institutes of Health’s (NIH’s) under funding of COVID-19 clinical research in the year the pandemic hit the USA.
• We conducted a cross-sectional study using the NIH Research Portfolio Online Reporting Tools Expenditures and Results (RePORTER ) datasets of all COVID-19 grants, including grants funded by COVID-19 supplemental appropriations.
• We calculated the number of grants and funding the NIH allocated towards COVID-19 in 2020 to different research types and clinical/scientific areas, and the time from funding opportunity announcement to award notice date.
• We only reviewed abstracts and did not review the entire funded proposals. There were other barriers to clinical research that were not captured here, including slow institutional review boards and long journal peer-review times.

Introduction

The National Institutes of Health (NIH) is the world’s largest funder of biomedical research, employing over 20 000 people with a US$45.3 billion budget in 2020, 41.7 billion appropriated by Congress with an additional 3.6 billion in COVID-19 supplementary funding. 1–3 Prior research suggested that the NIH research funding has not been proportionately aligned with disease burden in the population. 4–7 Throughout the 1990s, NIH funding patterns were under major scrutiny from Congress and the scientific community due to concerns that funding allocations by the NIH failed to adequately reflect the burden of disease on society. 6 In 1998, the Institue of Medicine (IOM) released a groundbreaking report guiding the NIH to improve and develop disease-specific funding processes. 8 A landmark study published in the New England Journal of Medicine as well as a follow-up study by Gillum et al in 2011 revealed that the NIH disease-specific funding levels were not correlated with several measures of disease burden. 5 6

The COVID-19 pandemic tested the NIH’s ability to fund critical research to answer research questions that significantly affect public health and require urgent scientific clarity. We analysed the relative weight and composition of the NIH research funding of COVID-19 research in 2020 to evaluate the responsiveness of the agency to the pandemic.

Study design and settings

We conducted a cross-sectional study using the NIH Research Portfolio Online Reporting Tools Expenditures and Results (RePORTER ) datasets of all COVID-19 grants, including grants funded by COVID-19 supplemental appropriations. 9 10 We also reviewed the NIH Fiscal Year 2020 budget and NIH Fiscal Year 2020 supplemental appropriations to identify spending on NIH COVID-19 research. 11

We reviewed all grants funded for COVID-19 research between 1 January 2020 and 31 December 2020. For each grant, we collected the date of funding opportunity announcements (NIH’s advertisements of available grant support), award notice date and the amount awarded as listed in the NIH RePORTER dataset. 12 The date of the Funding Opportunity Announcement was obtained from the NIH COVID-19 grant opportunities. 13

We categorised each grant into one of six research types: basic science, clinical science, translational science, public health, infrastructure and education and other ( online supplemental appendix 1 ). Each NIH-funded grant was screened to identify one or multiple clinical/scientific areas of focus within the abstracts ( online supplemental appendix 2 ). In order to create comprehensive definitions, we adapted definitions for research areas and subcategories of primary research subjects from NIH Research, Condition and Disease Categorization (RCDC) thesaurus and supplemented them using definitions from the Association of American Medical Colleges, National Cancer Institute, Economic Social Research Council, the Department of Health and Human Services and Methods in Educational Research. 14–20

Supplementary data

Each grant was independently reviewed and categorised by at least two independent reviewers (LB, SH, CD, CK, AM, BC). For grants that were categorised differently, a study group discussed the aims of the grant and made a final decision.

Patient and public involvement

No patients were involved in this study.

Data source

RePORTER is an electronic tool developed by the NIH that works in conjunction with the NIH’s RePORT website. This tool allows users to generate lists of funded NIH studies based on specific search criteria, such as funding source and research area. 11 To obtain a list of all the grants that funded COVID-19 research in 2020, we used the NIH’s pregenerated COVID-19 RePORTER dataset. 9 11 The information describing 2020 NIH funding by research was found on the RCDC RePORTER database. 21

The primary outcome for this analysis was to calculate the number of grants and funding the NIH allocated towards COVID-19 in 2020 to the six research types and each clinical/scientific area. The secondary outcome was to calculate the time from funding opportunity announcement to award.

Statistical analysis

We calculated the funding amount for research areas by compiling each grant’s total funding amount allocated by the NIH. The funding amount for the clinical/scientific area was calculated based on each grant’s categoriszation. We plotted the weekly number of COVID-19 grants awarded during 2020. Data cleaning and statistical analyses were conducted using Stata (V.16.0).

In 2020, COVID-19 research accounted for 4.9% (US$2.2 billion) of the annual NIH budget of US$45.3 billion. 3 22 Of the US$2.2 billion that the NIH spent on COVID-19 research, 91.0% was allocated from congressional special appropriations, while the remaining 9.0% of COVID-19 funding originated from the regular NIH annual budget that year. We found that several disease and condition-specific research areas were funded at levels much greater than COVID-19 ( figure 1 ). Rare Diseases research received 2.5-fold more funding than coronavirus research and ageing research received 2.2-fold more research funding than coronavirus research. 21

National Institutes of Health funding by research area (2020).

There were 1419 NIH COVID-19 grants from the year 2020 in the NIH RePORTER dataset. Of these, we identified 1108 COVID-19 grants with relevance to COVID-19 research, 24 were duplicates appearing in different places and 287 were categorised COVID-19 research; however, COVID-19 was not mentioned in the grant abstract or was not the focus of the grant. Of the 1108 COVID-19 grants identified, 266 grants were able to be matched to their funding opportunity announcement. The remainder had their funding opportunity announcements linked to ongoing projects and were unable to be matched with a current COVID-19 funding opportunity announcement. The average COVID-19 grant was issued funding 151 days (SD:±57.9) after its funding opportunity announcement, with a median of 137 days (IQR: 109–196) and range from 43 to 295 days. In a randomly selected pre-COVID sample of 20 grants in 2018 and 2019, the average time from the funding opportunity announcement to the awarded date was 606 days. There were 535 (48.3%) grants funded through regular 2020 appropriations and 573 (51.7%) funded through supplemental COVID-19) funding.

In the first 3 months of the global pandemic, a total of six grants were awarded for COVID-19 research. In the first half of 2020, a total of 240 grants were awarded funding ( figure 2 ). Accordingly, in the first 3 months of 2020, the NIH spent a total of 0.04% of its annual budget on COVID-19 research. In the first half of 2020, the NIH spent 1.1% of its annual budget on COVID-19 research. The months with the most COVID-19 research grants awarded were August and October.

Number of COVID-19 grants approved by National Institutes of Health in 2020.

Regarding the type of COVID-19 research funded, basic science research comprised the greatest number of grants funded by the NIH with a total of 313 grants, compromising 6.9% of total COVID-19 research funding. There were 231 grants awarded for public health research and 231 grants awarded for clinical research, accounting for 5.7% and 26.8% of NIH COVID-19 funding, respectively. The NIH allocated the largest dollar amount to infrastructure and education research with 55.5% of all COVID-19 funds going to these purposes with 216 grants, accounting for 2.7% of the NIH’s annual budget ( table 1 ).

National Institutes of Health (NIH) grants for COVID-19 research by research type (2020)

There was an average of 1.9 (SD:±1.0) clinical/scientific areas per grant awarded by the NIH. The most common clinical/scientific areas of research were social determinants of health (n=278 grants, 8.5% of COVID-19 funding), immunology (n=211 grants, 25.8% of COVID-19 funding) and pharmaceutical interventions (n=208 grants, 47.6% of COVID-19 funding) ( table 2 ). Of the 208 grants dedicated to pharmaceutical intervention research, 85 grants focused on novel therapeutics development (6.4% of COVID-19 funding), 79 grants focused on existing therapeutics (28.2% of COVID-19 funding) and 69 grants on vaccine development (32.2% of COVID-19 funding). Of the 211 immunology grants, 41 grants studied immunity gained after infection of COVID-19 and 15 grants studied immune response from vaccination. Of 64 neurological grants, 13 grants focused on changes of tastes or smell.

National Institutes of Health (NIH) grants for COVID-19 by clinical/scientific area (2020)*

*Each grant can have multiple areas.

There were 132 grants awarded for COVID-19 testing, compromising 8.5% of all COVID-19 funding. There were 83 grants on COVID-19 transmission, representing 3.5% of COVID-19 funding. Of these, 5 studied airborne transmission, and two grants studied COVID-19 transmission in schools.

A total of 104 grants focused on non-pharmaceutical interventions, with six grants on the efficacy of social distancing and two grants on the efficacy of face masks. Additionally, 92 grants studied the effects of COVID-19 infection in paediatric populations, 10 of which examined inflammatory syndrome in children. Geriatric health and COVID-19 was awarded 68 grants and maternal health and COVID-19 was awarded 41 grants. There were no grants dedicated to studying the efficacy of face masks in children.

Despite the escalating public health threat and poorly understood mechanism of transmission of the novel coronavirus in 2020, the NIH only spent 5.3% of their total budget that year on COVID-19 research, extending the prior literature that the NIH funding priorities misaligned with disease burden in the population. 6 8 The NIH’s slow start in funding COVID-19 research was also noted in a February 2021 study in Health Affairs by Sampat and Shadlen. 7 They described the current low investment in COVID-19 research as ‘small compared with the potential value of these interventions for ameliorating or preventing the disease and securing a return to normalcy’. A stronger research effort could have helped reduce transmission of the infection before a vaccine became available.

Infrastructure and education accounted for 55.9% of NIH COVID-19 funding, yet many of the major clinical questions surrounding COVID-19 transmission were unanswered at that time, such as transmission among children. Significant restrictions have been placed on the nation’s 52 million school-aged children, including school closures, 6-foot distancing requirements and outdoor masking while distancing; however, only a few grants were dedicated to studying these questions in this unique population, creating challenges for evidence-based policymaking. It is also concerning that we have identified 287 grants that are categorised as COVID-19 where COVID-19 was not mentioned in the grant abstract or was not the focus of the grant.

The lack of rapid clinical research funding to understand COVID-19 transmission may have contributed to the politicisation of the virus. Some of the most basic questions that were being asked of medical professionals in early 2020, such as how it spreads, when infected individuals are most contagious, and whether masks protect individuals from spreading or getting the virus, went unanswered. In the absence of evidence-based answers to the common questions the public was asking, political opinions filled that vacuum. Patient and public involvement in research prioritisation of funding could help direct a more urgent, focused and equitable response to health emergency.

The social and political climate of the COVID-19 pandemic has been plagued with misinformation hindering important mitigation efforts. Significant funding was made to Biomedical Advanced Research and Development Authority. However, this funding was focused on vaccines and therapeutics rather than clinical research on characteristic COVID-19. 9 A resilient healthcare system in times of crisis should be able to pivot funding towards specific grants answering critical gaps in knowledge. NIH may consider developing procedures to rapidly pivot funding and guidelines for reviewing targeted proposals relevant to addressing a public health emergency.

Our study has several limitations. The type of research and the clinical/scientific areas studied were based on definitions that may not be collectively exhaustive and mutually exclusive. In addition, we only reviewed abstracts and did not review the entire funded proposals, and we did not separate the share of new grants vs continued grants in the analysis. There were other barriers to clinical research that were not captured here, including slow institutional review boards and long journal peer-review times. A rapid research protocol that protects research subjects with standard ethical principles for research could be developed for the next health emergency.

NIH funding patterns for COVID-19 grants did not align with COVID-19 disease burden and were allocated slowly. The NIH should develop mechanisms to rapidly pivot funding to address scientific unknowns associated with a sudden, large-scale health emergency. Supporting sound clinical research aimed at developing evidence-based recommendations is important for public policy and promotes public trust in the medical profession during a pandemic.

Supplementary Material

Acknowledgments.

We thank West Health Institute for their research support on this study. We thank Farah Hashim, Jonathan Teinor and Karashini Ramamoorthi for their contribution in preparing this manuscript.

Contributors: LB, CD, CW and MM designed the study. LB, CD, AM, SH, CW, CK, BC, and FM collected the data. LB and CD analysed the data. LB, CD, AM, SH and CW prepared the first draft of the manuscript. LB, CD, AM, SH, CW, CK, BC, FM, TD, GB, KS and MM made critical revisions to the manuscript. CD and LB acted as guarantors for the manuscript. All authors reviewed and approved the final draft and agreed to be accountable for all aspects of the manuscript in ensuring that questions related to the accuracy.

Funding: This research was supported by a grant from the Gary and Mary West Health Institute.

Competing interests: None declared.

Patient and public involvement: Patients and/or the public were not involved in the design, or conduct, or reporting, or dissemination plans of this research.

Provenance and peer review: Not commissioned; externally peer reviewed.

Supplemental material: This content has been supplied by the author(s). It has not been vetted by BMJ Publishing Group Limited (BMJ) and may not have been peer-reviewed. Any opinions or recommendations discussed are solely those of the author(s) and are not endorsed by BMJ. BMJ disclaims all liability and responsibility arising from any reliance placed on the content. Where the content includes any translated material, BMJ does not warrant the accuracy and reliability of the translations (including but not limited to local regulations, clinical guidelines, terminology, drug names and drug dosages), and is not responsible for any error and/or omissions arising from translation and adaptation or otherwise.

Data availability statement

Ethics statements, patient consent for publication.

Not applicable.

Ethics approval

Early Impacts of the COVID-19 Pandemic: Findings from the 2020 Guttmacher Survey of Reproductive Health Experiences

Reproductive rights are under attack. Will you help us fight back with facts?

The COVID-19 pandemic in the United States has quickly reshaped the American social landscape, including people’s intimate lives. This report provides an initial look at newly collected data on the emerging impact of the pandemic on women’s sexual and reproductive health (SRH) and reproductive autonomy in the United States. It focuses on the following indicators:

• Childbearing preferences
• Contraceptive use
• Access to contraception and other SRH services
• Telemedicine for contraceptive care
• Exposure to intimate partner violence (IPV)

The pandemic has changed the social and economic realities of people’s lives. The nearly universal imposition of stay-at-home requirements begun in mid-March 2020, the numerous restrictions remaining thereafter and the widespread uptake of social distancing have led to growing economic and social insecurity. Further, existing social inequities mean that the burden of the pandemic has not been experienced equally. For example, COVID-related mortality has been greater among people of color. 1 Women are more likely than men to have lost their jobs, and women of color have thus far experienced the most job losses. 2,3 The large increase in overall unemployment has meant that many people have lost their work-related health insurance, resulting in reduced access to health care. 4

Anecdotal reports and press accounts have described the impact of the pandemic on women’s SRH and well-being. Social distancing and the disruption caused by the pandemic have created physical and economic barriers to contraception and other SRH services. The changing economic and social environment may be shifting people’s fertility preferences or patterns of contraceptive use. Concerns have surfaced about women’s exposure to IPV * and about inadequate access to IPV services during the pandemic. 6,7 IPV, particularly acts of sexual violence and reproductive control, disproportionately impacts women of reproductive age and can compromise women’s health and autonomy. 8

Previous large-scale disruptions have affected women’s reproductive lives. For example, during the 2008 Great Recession, women reported difficulties affording contraception or other SRH care, 9 and household unemployment was associated with an increased likelihood of IPV. 10 Further, that event helped shift women’s fertility preferences and set in motion declines in national fertility rates. 11,12 Similarly, prior natural disasters in the United States, such as Hurricane Katrina, have disrupted the availability of contraceptive methods and services and have led to increases in IPV and (at least) short-term declines in fertility. 13–15 The impact of these prior disruptions suggests that the COVID-19 pandemic—with its unprecedented and severe economic, social and physical challenges—will also have major consequences for reproductive health goals and behaviors, access to care and far beyond.

In this report, we examine new data collected from cisgender women in the United States on how they feel that the COVID-19 pandemic has influenced their SRH. We also examine women’s reports of pandemic-related economic challenges and how these challenges intersect with their sexual and reproductive experiences. Across these analyses, we give particular attention to longstanding social and economic inequities experienced by women based on their race, ethnicity, sexual orientation or income level. To understand the scope and magnitude of these initial impacts of the COVID-19 crisis, we compare them directly with the SRH challenges observed as part of the social and economic instability following the 2008 Great Recession.

This analysis is based on a national internet-based survey conducted by the Guttmacher Institute over the week of April 30–May 6, 2020. The respondents were 2,009 cisgender women aged 18–49 who had ever engaged in penile-vaginal sex. All differences discussed in the text are statistically significant at the p<.05 level. Additional information about the survey and methods of analysis is detailed in the Appendix .

Fertility preferences

Individuals’ fertility preferences are shaped in part by the broader socioeconomic context. Pandemic-related worries about finances and job stability, as well as general unease about the future, may be shifting how women feel about having children.

• More than 40% of women reported that because of the COVID-19 pandemic, they changed their plans about when to have children or how many children to have. Changes in fertility preferences were more common among women without any children than among those with children (45% vs. 38%).
• Overall, one-third of women (34%) wanted to get pregnant later or wanted fewer children because of the pandemic ( Figure 1 ). †
• Black women (44%) and Hispanic women (48%) were more likely than White women (28%) to state that because of the pandemic, they wanted to have children later or wanted fewer children.
• Queer ‡   women (46%) were more likely than straight women (33%) to report such a change in fertility preferences.
• Lower-income women § (37%) were more likely than higher-income women (32%) to report this change.
• In contrast, 17% of women wanted to have a child sooner or wanted to have more children because of the coronavirus pandemic.

Access to contraception and SRH services

During the pandemic, women’s access to contraception and other SRH services—as well as their ability to pay for these services—has been constrained. Access to in-person health care has been severely limited, and people may have avoided seeking out available services because of fears that they or a family member would be exposed to COVID-19 as a result.

• One in three women (33%) reported that because of the pandemic, they had had to delay or cancel visiting a health care provider for SRH care, or had had trouble getting their birth control ( Figure 2 ).
• Such barriers to timely care were more common among Black (38%) and Hispanic (45%) women than among White women (29%), and more common among queer women (46%) than among straight women (31%).
• Lower-income women were also more likely than higher-income women to report having experienced delays or being unable to get contraceptive or SRH care because of the pandemic (36% vs. 31%).

Many women reported feeling increased worry about their ability to pay for and obtain contraception and other SRH services because of the pandemic. ** These impacts have been unevenly distributed, and the pandemic appears to be perpetuating existing inequities, although telemedicine offers a new means for some women to obtain birth control.

• Hispanic women and queer women were more likely than White and straight women, respectively, to report increased worry about each type of concern.
• For both measures, more than one-third of Hispanic and queer women reported increased worry.
• Lower-income women were more likely than higher-income women to report a pandemic-related increase in worry about affording or obtaining contraception (32% vs. 23%).
• Telemedicine has helped to fill in some new SRH service gaps. For example, among women using the pill, 24% reported that, because of the pandemic, they had switched to a telemedicine appointment with their health care provider to have their prescription refilled.

Attitudes toward contraception ††

Many women’s attitudes toward contraception have changed because of the pandemic. For some women, the crisis appears to have promoted a shift to more effective contraceptive methods and more consistent use.

• This increased attention to the consistency of contraceptive use was more common among women who reported wanting to delay childbearing or have fewer children because of the pandemic (49%) than among women wanting more children or those whose childbearing preferences did not change (26%).
• The proportion intending to use contraceptives more consistently was also greater among Black women (44%) and Hispanic women (43%) than among White women (30%).
• This interest was more common among women expressing concerns about reduced access to contraceptives (53%) than among women without these concerns (13%).

Intimate partner violence

Economic crises and stress are recognized as contributing factors to IPV, 10,16 and the confinement, increased stressors and uncertainty of the pandemic may have exposed some women to IPV. Further, stay-at-home orders and social distancing have made it harder for people experiencing IPV to obtain support and resources.

• Humiliated or emotionally abused them (11%)
• Forced them to engage in any kind of sexual activity (5%)
• Kicked, hit, slapped or otherwise physically harmed them (6%)
• Made them feel afraid (10%)
• Among women who reported IPV in early 2020, one in three (33%) indicated having trouble or being unable to seek services in response to the violence they experienced.

Economic impact of the COVID-19 pandemic

Many respondents found themselves facing financial difficulties as a result of the pandemic; these may contribute to the impact of the crisis on women’s access to care and their fertility desires. The fact that sizable proportions of women reported COVID-related economic challenges is especially notable because surveys were completed in early May 2020, while the pandemic and its consequences were still unfolding.

• More than half of respondents (52%) said that they or someone in their household had lost their job or had had their work hours reduced because of the pandemic.
• Compared with women who were not financially worse off than they had been a year ago, those who were worse off were more likely to report delays or inability to get contraceptives or other SRH care (42% vs. 29%).
• Women whose finances had worsened were also more likely than other women to report wanting to delay childbearing or have fewer children because of the pandemic (39% vs. 32%).
• Among women with children, 41% agreed with the statement "Because of the COVID-19 (coronavirus) pandemic, I worry more about being able to take care of my children." This worry was more common among women who reported being financially worse off than among those who were not worse off (55% vs. 35%).

Comparing the initial SRH impact of the pandemic with the 2008 recession

Few societal events could rival the COVID-19 pandemic for its effects on people’s lives, but the 2008 Great Recession also had a major economic and social impact on the United States. Here, we compare findings from a 2009 Guttmacher Institute survey examining how the 2008 recession had affected women’s lives and SRH 18 to findings from this new 2020 survey on COVID-19, to provide context for understanding the initial impacts of the pandemic. The recession survey was limited to women aged 18–34 with household incomes below $75,000, so for the purpose of comparison in this section of the report, we have reduced our 2020 study sample to a similar group. We were unable to test differences between the two studies for statistical significance.

Comparing the two surveys shows that in many ways, the magnitude of the impact of the COVID-19 crisis on women’s SRH already rivals that of the 2008 recession, even just a few months into the pandemic.

• The COVID-19 pandemic and the 2008 recession resulted in fairly similar proportions of women shifting their fertility preferences in favor of delaying childbearing or having fewer children ( Figure 5 ).
• Some 39% of women said they were being more careful than they used to be about their contraceptive use as a result of the pandemic, whereas 29% of women reported such a shift in response to the 2008 recession.
• Similar proportions of women reported increased worry about being able to afford their birth control as a result of the pandemic (25%) and as a result of the recession (23%).
• A higher proportion of women reported delays in access or inability to get contraception or other SRH care because of the COVID-19 pandemic than because of the recession (39% vs. 24%).

We found clear indications that the COVID-19 pandemic has already had rapid and broad impacts on women’s sexual and reproductive health (SRH) experiences, even as the full effects of the crisis continue to unfold. This snapshot documents how, in just the few months since the United States entered the crisis, 19 the disruption of this pandemic has created logistic and economic barriers to accessing contraception and other SRH services and has spurred significant changes in women’s fertility and contraceptive preferences and behaviors. Importantly, the pandemic is compounding existing social inequities by disproportionately affecting Hispanic and Black women, queer women and poorer women.

Since at least mid-March, in-person health care has been severely limited, with providers needing to limit hours and curtailing in-person visits. Women reported having had to delay or cancel SRH care and expressed concerns about their ability to afford or obtain contraceptives. Even once all stay-at-home restrictions are lifted, women may not seek out needed SRH services, due to fears that doing so may expose them or a family member to COVID-19, and providers may continue to provide reduced in-person care. The uneven public health response to the pandemic at the federal, state and local levels might prolong this fear or uncertainty. These disruptions in needed care could result in continued barriers to obtaining desired contraceptives, increases in pregnancies among women who wanted to avoid them and delayed identification and treatment of cervical cancer and STIs. All of these outcomes carry negative health, social and economic consequences.

With substantial job losses and broad economic uncertainty, more than one in three women reported that because of the pandemic, they want to delay having a child or limit future births. Even with many women reporting that they have increased their consistent use of contraceptives, these changing fertility preferences, combined with barriers to obtaining contraceptives, suggest that the number of women who will need to access abortion care may increase. Yet as of May 12, 2020, at least 11 states had attempted to exploit the pandemic by banning or restricting abortion access as "nonessential health care," 20 contradicting leading medical experts’ statements asserting that abortion remains an essential and time-sensitive health service during the COVID-19 crisis. 21 These restrictions, coupled with the logistic and economic challenges associated with obtaining care during the pandemic, create new barriers to abortion services.

Barriers to abortion may result in an increase in births from unintended pregnancies. Still, a COVID-related baby boom is unlikely; 22 instead, the economic and social instability of the pandemic is likely to contribute to ongoing declines in childbearing in the United States. 23 Reports of similar shifts in fertility preferences because of COVID-19 have also been identified recently in the United Kingdom, Germany, France, Spain and Italy, suggesting that declines in fertility may be widespread. 24

Stay-at-home orders, growing economic insecurity and disruptions to the health care system have made the COVID-19 pandemic a unique experience for most people living in the United States. While the broad social and economic disruptions of the COVID-19 pandemic differentiate it from other recent crises, the immediate short-run SRH impact is in some ways comparable to the longer-run impacts of the 2008 recession. Given that we are only at the early stages of this crisis, continued job and insurance losses will likely create ongoing economic challenges that will further affect SRH.

The social impact of the COVID-19 health crisis and its economic consequences cannot be disentangled clearly. The emerging recession and the slow pace of economic recovery will likely compound the pandemic's impact on SRH. Health insurance is key to obtaining SRH care, and as more people lose their jobs, they will also lose their insurance, further disrupting access to care. Longer-term monitoring of individuals’ experiences with SRH care will be important for identifying needs and prioritizing new approaches. Access to SRH care, including contraception, is a key component of reproductive autonomy and justice in allowing women to control if and when to have a child. 25 Supporting the goals of reproductive justice will mean focusing on responses to the pandemic that prioritize communities that have already borne the brunt of existing structural, societal, economic and health inequities. 26–28

While our study findings focus on individual experiences, changes in the health care system are needed to better serve women as the challenges of the pandemic continue to unfold. Further expansion and adoption of innovative approaches to SRH services, such as telemedicine or provision of contraceptives by mail, may ultimately increase access to SRH care. Indeed, a shift to telemedicine has helped maintain access to contraceptive care for some women thus far. However, regardless of the mode of health care delivery, the economic barriers created by the loss of health insurance and reductions in household income must also be addressed, to avoid compounding existing disparities.

Policy experts have identified ways in which SRH services can be supported as essential health care. In addition to broadening access to SRH care through telemedicine, these include protecting and expanding access to comprehensive health insurance coverage and increasing funding for the Title X national family planning system in response to the likely growing numbers of the uninsured and increased demand for publicly funded SRH services. 29,30 Increased support for community-level services, such as hotlines, counseling and emergency housing, to better help those experiencing IPV is also needed, as many women who experienced IPV in recent months reported that they were unable to seek help.

Although this report provides revealing data on the early impact of the pandemic on women’s SRH needs and experiences, it could not address all of the important SRH issues or the needs of all users of SRH services. For example, we focused on cisgender women, while recognizing that individuals of all genders need access to SRH services. Greater COVID-19–related barriers to care among queer women and women of color highlight the need for provision of inclusive and culturally aware care. Adolescents represent another group with distinct SRH needs not examined here; for them, stay-at-home orders and other barriers to in-person care limit access to private and confidential services. 31 In addition, attention needs to be given to the health care needs of pregnant and parenting individuals, 32 as well as to aspects of testing for and treatment of STIs that may not have been captured in this survey. 33 Further, this study focused on examining individual-level impact and did not directly examine the impact of the pandemic on the struggling health care system.

Even in the short period covered by our survey, the COVID-19 pandemic has already had an impact on women’s sexual and reproductive lives. It has affected their ability to obtain needed SRH care and contraceptive services, raised their concerns about affording and accessing this care and shifted their fertility preferences. These effects have not been evenly distributed and tend to be felt by groups bearing the brunt of existing inequities. In this way, the pandemic has illuminated systemic failings that perpetuate health and social disparities. The impacts analyzed in this report are fairly immediate to the current conditions of the crisis; in the longer term, the pandemic is likely to have larger and more varied effects. While the spread of COVID-19 has created a health crisis, we can take steps to minimize the impact on SRH. The pandemic will have far-flung effects on individuals, providers and the health care system. Those looking to address barriers to care will have to acknowledge and work to improve care across all of these levels. Policymakers must recognize that SRH care is essential in people’s lives and cannot be overlooked, bargained away or exploited vis-à-vis the competing COVID-19 priorities. Protecting individuals’ ability to make decisions about their SRH, and supporting the health care system to meet these needs, is essential.

Appendix: Detailed Methodology

Study participants (n=2,009) were recruited via the Qualtrics online panel. 34 The Qualtrics Panel is a subdivision of Qualtrics, a private research software company specializing in Web-based data collection that partners with more than 20 Web-based panel providers. Panelists receive an invitation to participate in the survey via email or social media accounts. 35 Question items about COVID-19 were included in a larger survey measuring a range of sexual and reproductive health (SRH) experiences, the Guttmacher Survey of Reproductive Health Experiences (GSRHE). Average completion time for the entire survey was 14 minutes. The COVID-19 questions accounted for 31 of 127 survey items.

Eligible respondents were those who (1) identified as a cisgender woman (i.e., assigned female at birth and currently identifying as a woman), (2) were aged 18–49, (3) were residing in the United States and (4) reported ever having had penile-vaginal sex. Participants who matched the eligibility criteria and agreed to participate in a research study were asked to complete an online survey that included a module on SRH and the COVID-19 pandemic. Surveys were conducted in English.

Study procedures were approved by the Guttmacher Institute institutional review board. Participants could skip any survey questions and could end the survey at any time. The survey collected no identifying information, and, to maintain respondents’ confidentiality, Qualtrics did not share respondents’ IP addresses with the study team. Panelists who completed the survey received $1.07 or the equivalent in redeemable points directly from Qualtrics. This is a standard incentive used for Qualtrics panel surveys that collect data from the general population.

Quota sampling was used to ensure a diversity of respondents by race and ethnicity, region and age. The survey utilized an opt-in sample and was not designed to be fully representative of the national population. However, the survey sample broadly mirrors the regional and racial and ethnic breakdown of the United States, based on the 2010 Census. Qualtrics has been found to be more demographically representative than surveys recruited through other opt-in approaches. 36

To minimize inattentive responses, eligible participants were excluded from the analysis if their survey was completed in less than five minutes (n=7) or more than 600 minutes (n=1). Those who completed fewer than 50% of survey questions (n=10) were excluded, to ensure data completeness. We also excluded from the study participants who provided nonsensical responses to open-ended questions (n=7).

Appendix Table 1 compares the GSRHE to a similarly defined sample of respondents from the 2015–2017 National Survey of Family Growth (NSFG). The GSRHE sample appears similar to that of the NSFG in terms of age, poverty status, race and ethnicity, marital status and sexual orientation. On the other hand, the GSRHE sample is more highly educated than the NSFG sample and has a higher proportion of childless women.

Data were analyzed using Stata 16.0. We estimated bivariate logistic regression analyses for differences between subgroups; all differences presented in the text of this report were statistically significant at the p<.05 level, while statistically significant differences between subgroups are demarcated in the accompanying figures. The exception to this is the comparison of impacts of the 2008 recession and the COVID-19 pandemic, as complete standard errors were not available from the published recession findings. Because quotas for race/ethnicity and region were set to mirror the U.S. Census population, we did not weight data in our analyses.

*The U.S. Centers for Disease Control and Prevention defines IPV as behaviors perpetrated by a person's spouse or romantic partner that include physical violence, sexual violence or psychological/emotional violence. 5

†Women could report more than one change in their fertility preferences.

‡Respondents were asked to report their sexual orientation from the following responses: heterosexual or straight, gay or lesbian, bisexual and other. We combined all responses other than "heterosexual or straight" into a single "queer" category.

§Defined as those with a household income less than 200% of the 2019 federal poverty level ($25,750 for a household of four).

**Analysis of survey questions about increased worry related to obtaining and paying for contraception excluded women currently relying on female sterilization.

††These measures excluded women currently relying on female sterilization.

‡‡IPV behaviors were assessed using questions developed from the HARK screening tool recommended by the U.S. Preventive Services Task Force. 17

1. Hooper MW, Nápoles AM and Pérez-Stable EJ, COVID-19 and racial/ethnic disparities, JAMA , 2020, doi:10.1001/jama.2020.8598.

2. Ewing-Nelson C, After a full month of business closures, women were hit hardest by April’s job losses, Fact Sheet , Washington, DC: National Women’s Law Center, 2020, https://nwlc-ciw49tixgw5lbab.stackpathdns.com/wp-content/uploads/2020/0… .

3. Gupta AH, Why some women call this recession a "shecession," New York Times , May 9, 2020, https://www.nytimes.com/2020/05/09/us/unemployment-coronavirus-women.ht… .

4. Garrett B and Gangopadhyaya A, How the COVID-19 recession could affect health insurance coverage, May 4, 2020, https://www.rwjf.org/en/library/research/2020/05/how-the-covid-19-reces… .

5. Saltzman L et al., Intimate Partner Violence Surveillance Uniform Definitions and Recommended Data Elements: Version 1.0 , Atlanta: National Center for Injury Prevention and Control, Centers for Disease Control and Prevention, 2002.

6. Fetters A and Khazan O, The worst situation imaginable for family violence, The   Atlantic , May 8, 2020, https://www.theatlantic.com/family/archive/2020/05/challenge-helping-ab… .

7. Domestic violence has increased during coronavirus lockdowns, The Economist , April 22, 2020, https://www.economist.com/graphic-detail/2020/04/22/domestic-violence-h… .

8. Hasstedt K and Rowan A, Understanding intimate partner violence as a sexual and reproductive health and rights issue in the United States, Guttmacher Policy Review , 2016, 19:37–45, https://www.guttmacher.org/gpr/2016/07/understanding-intimate-partner-v… .

9. Gold RB, Recession taking its toll: family planning safety net stretched thin as service demand increases, Guttmacher Policy Review , 2010, 13(1):5.

10. Schneider D, Harknett K and McLanahan S, Intimate partner violence in the great recession, Demography , 2016, 53(2):471–505, doi:10.1007/s13524-016-0462-1.

11. Schneider D, The Great Recession, fertility, and uncertainty: evidence from the United States, Journal of Marriage and the Family , 2015, 77(5):1144–1156, doi:10.1111/jomf.12212.

12. Hartnett CS and Gemmill A, Recent trends in U.S. childbearing intentions, Demography , forthcoming.

13. Ellington SR et al., Contraceptive availability during an emergency response in the United States, Journal of Women’s Health , 2013, 22(3):189–193, doi:10.1089/jwh.2012.4178.

14. Stone L, Short-run fertility responses to mortality events: a look to the past, Applied Demography , 2020, 32(1):18–20.

15. Schumacher JA et al., Intimate partner violence and Hurricane Katrina: predictors and associated mental health outcomes, Violence and Victims , 2010, 25(5):588–603.

16. Conger RD et al., Linking economic hardship to marital quality and instability, Journal of Marriage and the Family , 1990, 52(3):643–656, doi:10.2307/352931.

17. United States Preventive Services Taskforce, Screening for intimate partner violence, elder abuse, and abuse of vulnerable adults, JAMA , 2018, 320(16):1678­–1687, doi:10.1001/jama.2018.14741.

18. Guttmacher Institute, A Real-Time Look at the Impact of the Recession on Women’s Family Planning and Pregnancy Decisions , 2009, https://www.guttmacher.org/report/real-time-look-impact-recession-women… .

19. World Health Organization, Director-General’s opening remarks at the media briefing on COVID-19, 2020, https://www.who.int/dg/speeches/detail/who-director-general-s-opening-r… .

20. Jones RK, Lindberg LD and Witwer E, COVID-19 abortion bans and their implications for public health, Perspectives on Sexual and Reproductive Health , 2020, 52(2), https://doi.org/10.1363/psrh.12139 .

21. American College of Obstetricians and Gynecologists (ACOG), Joint statement on abortion access during the COVID-19 outbreak, news release, 2020, https://www.acog.org/en/News/News Releases/2020/03/Joint Statement on Abortion Access During the COVID 19 Outbreak .

22. Kearney MS and Monday PL, Half a Million Fewer Children? The Coming COVID Baby Bust , Washington, DC: Brookings Institution, 2020, https://www.brookings.edu/research/half-a-million-fewer-children-the-co… .

23. Martin J et al., Births: final data for 2018, National Vital Statistics Reports , 2019, 68(13):47.

24. Luppi F, Arpino B and Rosina A, The impact of COVID-19 on fertility plans in Italy, Germany, France, Spain and UK, SocArXiv, 2020, doi:10.31235/osf.io/wr9jb.

25. Ross L and Solinger R, Reproductive Justice: An Introduction , first ed., Berkeley, CA: University of California Press, 2017, https://www.ucpress.edu/book/9780520288201/reproductive-justice .

26. Chalas E and Phipps MG, COVID-19 call to action for women’s health, Washington, DC: ACOG, 2020, https://www.acog.org/advocacy/-/media/7aa1e9b4d6a846b589b714116606a33f… .

27. Hall KS et al., Centering sexual and reproductive health and justice in the global COVID-19 response, Lancet , 2020, 395(10231):1175–1177, doi:10.1016/S0140-6736(20)30801-1.

28. National Women’s Law Center, Promoting equitable access to health care in response to COVID-19, 2020, https://nwlc-ciw49tixgw5lbab.stackpathdns.com/wp-content/uploads/2020/0… .

29. Ahmed Z et al., Nine things Congress must do to safeguard sexual and reproductive health in the age of COVID-19, Policy Analysis , New York: Guttmacher Institute, 2020, https://www.guttmacher.org/article/2020/04/nine-things-congress-must-do… .

30. Nash E et al., Ten things state policymakers can do to protect access to reproductive health care during the COVID-19 pandemic, Policy Analysis , New York: Guttmacher Institute, 2020, https://www.guttmacher.org/article/2020/05/ten-things-state-policymaker… .

31. Lindberg LD, Bell DL and Kantor LM, The sexual and reproductive health of adolescents and young adults during the COVID-19 pandemic, Perspectives on Sexual and Reproductive Health , 2020, https://onlinelibrary.wiley.com/doi/abs/10.1363/psrh.12151 .

32. Rasmussen SA et al., Coronavirus disease 2019 (COVID-19) and pregnancy: what obstetricians need to know, American Journal of Obstetrics & Gynecology , 2020, 222(5):415–426, doi:10.1016/j.ajog.2020.02.017.

33. Frederiksen B, Gomez I and Salganicoff A, A look at online platforms for contraceptive and STI services during the COVID-19 pandemic, San Francisco: Kaiser Family Foundation, 2020, https://www.kff.org/coronavirus-covid-19/issue-brief/a-look-at-online-p… .

34. Qualtrics, Online panels: get responses for surveys & research, Panels & Samples , no date, https://www.qualtrics.com/research-services/online-sample/ .

35. ESOMAR, 28 questions to help buyers of online samples, 2012, https://www.esomar.org/what-we-do/code-guidelines/28-questions-to-help-… .

36. Boas TC, Christenson DP and Glick DM, Recruiting large online samples in the United States and India: Facebook, Mechanical Turk, and Qualtrics, Political Science Research and Methods , 2020, 8(2):232–250, doi:10.1017/psrm.2018.28.

Suggested Citation

Lindberg LD et al., Early Impacts of the COVID-19 Pandemic: Findings from the 2020 Guttmacher Survey of Reproductive Health Experiences , New York: Guttmacher Institute, 2020.

Acknowledgments

This report was written by Laura D. Lindberg, Alicia VandeVusse, Jennifer Mueller and Marielle Kirstein, all of the Guttmacher Institute. It was edited by Michael Klitsch and Haley Ball. The authors gratefully acknowledge the critical feedback and contributions to developing survey items of the following Guttmacher colleagues: Ruth Dawson, Joerg Dreweke, Rachel Jones, Megan Kavanaugh, Kathryn Kost and Ann Moore.

The data analyzed in this report were collected as part of the Guttmacher Survey of Reproductive Health Experiences, with funding provided partially by the Eunice Kennedy Shriver National Institute of Child Health and Human Development (NIH Award R01HD084473). All analyses presented here were conducted separately from this funding. The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Institutes of Health.

Home > AACR Cancer Progress Report > AACR Cancer Progress Report 2020: Contents > Cancer in 2020

Cancer in 2020

In this section, you will learn:

• In the United States, the overall cancer death rate has been steadily decreasing since the 1990s, with the reductions from 1991 to 2017 translating into more than 2.9 million cancer deaths avoided.
• The decline in the overall cancer death rate is being fueled in large part by a dramatic decrease in the lung cancer death rate predominantly as a result of reduced smoking rates.
• Since the 1990s, the age-adjusted overall cancer death rate has decreased more rapidly among African Americans than among whites; however, the African American population still disproportionately shoulders the burden of overall cancer mortality.
• The economic burden of cancer is enormous, both in the United States and globally.
• Research: Driving Progress Against Cancer

Cancer: An Ongoing Public Health Challenge

• Variable Progress among Cancer Types, Subtypes, and Stages of Diagnosis

Disparities in Progress for Certain Population Groups

The growing population burden of cancer.

• Cancer: A Costly Disease. Research: A Vital Investment

Research: Driving Progress against Cancer

Research continues to be our best defense against cancer because it is the driving force behind all clinical and policy advances that improve cancer prevention, detection, diagnosis, treatment, and, increasingly, cures for individuals around the world.

Each advance that spurs progress against cancer is the result of many years of collaboration between different stakeholders dedicated to fundamentally changing the face of this devastating disease (see sidebar on Driving Progress against Cancer Together ).

In the United States, the remarkable progress being made against cancer is illustrated by the fact that more children, adolescents, and adults are surviving longer after a cancer diagnosis. The U.S. 5-year relative survival rate for all cancers combined rose from 49 percent for people diagnosed in the mid-1970s to 70 percent for those diagnosed from 2010 to 2016 ( 2 ) Howlader N, Noone AM, Krapcho M, Miller D, Brest A, Yu M, Ruhl J, Tatalovich Z, Mariotto A, Lewis DR, Chen HS, Feuer EJ, Cronin KA (eds). SEER Cancer Statistics Review, 1975-2017, National Cancer Institute. Bethesda, MD [Internet]. [cited 2020 Jun 29]. . The 5-year relative survival rate for all cancers diagnosed among U.S. children and adolescents (ages 0–19) from 2010 to 2016 was 85 percent, up from 63 percent for those diagnosed in the mid-1970s ( 2 ) Howlader N, Noone AM, Krapcho M, Miller D, Brest A, Yu M, Ruhl J, Tatalovich Z, Mariotto A, Lewis DR, Chen HS, Feuer EJ, Cronin KA (eds). SEER Cancer Statistics Review, 1975-2017, National Cancer Institute. Bethesda, MD, https://seer.cancer.gov/csr/1975_2 [Internet]. [cited 2020 Jun 29]. ( 3 ) American Cancer Society. Cancer Facts and Figures 2014. (see Figure 1 ).

Another sign of the extraordinary progress being made against cancer in the United States is that the age-adjusted overall cancer death rate has been declining since 1991 ( 5 ) Siegel RL, Miller KD, Jemal A. Cancer statistics, 2020. CA Cancer J Clin [Internet]. 2020; . The largest reduction in the U.S. age-adjusted overall cancer death rate ever seen in a single year, 2.2 percent, occurred from 2016 to 2017, which is the last year for which these data are available. Overall, since its peak in 1991, the rate has declined by 29 percent, a reduction that translates into more than 2.9 million cancer deaths avoided.

The decline in the U.S. age-adjusted overall cancer death rate has been fueled in large part by a dramatic decline in the lung cancer death rate predominantly as a result of reduced smoking rates ( 5 ) Siegel RL, Miller KD, Jemal A. Cancer statistics, 2020. CA Cancer J Clin [Internet]. 2020; . The decline in the lung cancer death rate has accelerated in recent years, falling 2.4 percent each year from 2008 to 2013 and then falling 4.3 percent each year from 2013 to 2017. During the 2013 to 2017 period, the death rate for melanoma, which is the deadliest type of skin cancer, also fell at a remarkable rate of 6.4 percent each year ( 5 ) Siegel RL, Miller KD, Jemal A. Cancer statistics, 2020. CA Cancer J Clin [Internet]. 2020; . This striking reduction has been attributed in large part to the innovative new therapeutics approved by the U.S. Food and Drug Administration (FDA) for treating certain patients with the disease since 2011 (see Figure 2 )

As more and more new anticancer therapeutics are approved by the FDA and we continue to make scientific, clinical, and policy advances in cancer prevention, etiology, detection, diagnosis, treatment, and survivorship, we will accelerate the pace of progress against cancer. In this report, we focus on advances made during the 12 months from August 1, 2019, to July 31, 2020. Among the advances in cancer treatment that occurred during this period are the 20 new anticancer therapeutics approved by the FDA for introduction into the clinic. In addition, during this period, the FDA expanded the uses of 15 previously approved anticancer therapeutics to include additional types of cancer (see Progress across the Spectrum of Cancer Treatment .

Although we have made incredible progress against cancer, this disease continues to be an enormous public health challenge around the world (see sidebar on Cancer: A Global Public Health Challenge ). In 2020, making further inroads against cancer has been further complicated by the Coronavirus Disease 2019 (COVID-19) pandemic, as discussed in COVID-19 and Cancer ). As one example, it is estimated that there will be at least 10,000 additional deaths from breast cancer and colorectal cancer over the next decade in the United States as a result of the adverse effect of the COVID-19 pandemic on screening and treatment for these two types of cancer ( 10 ) Sharpless NE. COVID-19 and cancer. Science [Internet]. American Association for the Advancement of Science; 2020 [cited 2020 Jun 29];368:1290. .

The public health challenge posed by cancer in the United States is illustrated by the fact that researchers project that there will be 1,806,590 new cases of cancer diagnosed in 2020 and that there will be 606,520 deaths from the disease ( 8 ) (see Table 1 ). These numbers translate into 206 new cancer cases and 69 cancer deaths every hour of every day.

Variable Progress among Types of Cancer, Subtypes of Cancer, and Stages of Diagnosis

Among the challenges we face is that progress against cancer has not been uniform for all types of cancer ( 2 ) Howlader N, Noone AM, Krapcho M, Miller D, Brest A, Yu M, Ruhl J, Tatalovich Z, Mariotto A, Lewis DR, Chen HS, Feuer EJ, Cronin KA (eds). SEER Cancer Statistics Review, 1975-2017, National Cancer Institute. Bethesda, MD, https://seer.cancer.gov/csr/1975_2 [Internet]. [cited 2020 Jun 29]. . Nor has it been uniform for all subtypes and stages of a given type of cancer ( 2 ) Howlader N, Noone AM, Krapcho M, Miller D, Brest A, Yu M, Ruhl J, Tatalovich Z, Mariotto A, Lewis DR, Chen HS, Feuer EJ, Cronin KA (eds). SEER Cancer Statistics Review, 1975-2017, National Cancer Institute. Bethesda, MD, https://seer.cancer.gov/csr/1975_2 [Internet]. [cited 2020 Jun 29]. .

These challenges are illustrated by the fact that the 5-year relative survival rates for U.S. patients vary widely depending on the type of cancer diagnosed, the subtype of the cancer diagnosed, and the stage at diagnosis ( 2 ) Howlader N, Noone AM, Krapcho M, Miller D, Brest A, Yu M, Ruhl J, Tatalovich Z, Mariotto A, Lewis DR, Chen HS, Feuer EJ, Cronin KA (eds). SEER Cancer Statistics Review, 1975-2017, National Cancer Institute. Bethesda, MD, https://seer.cancer.gov/csr/1975_2 [Internet]. [cited 2020 Jun 29]. . For example, the overall 5-year relative survival rates of 98 percent for men with prostate cancer and 85 percent for adults with chronic lymphocytic leukemia (CLL) stand in stark contrast to the overall 5-year relative survival rates of 18 percent for people with liver cancer and 25 percent for those with acute myeloid leukemia (AML). Among women with breast cancer, those diagnosed with the triple-negative subtype have a 5-year relative survival rate of 77 percent, while those with the hormone receptor-positive subtype have a 5-year relative survival rate of greater than 90 percent. Substantial variation in the 5-year relative survival rate is also seen for the two main subtypes of lung cancer; it is 24 percent among patients with non-small cell lung cancer (NSCLC) and 6 percent among those with small cell lung cancer. In addition, among women with endometrial cancer and adults with colorectal cancer, those whose cancer is confined to the uterus, or to the colon or rectum, have 5-year relative survival rates of 95 percent and 90 percent, respectively, while those whose cancer has metastasized have 5-year relative survival rates of 17 percent and 14 percent, respectively.

Developing new and effective tests for the early detection of more types of cancer could help address the challenge of variable progress between types of cancer because patients diagnosed when cancer is at an early stage, before it has spread to other parts of the body, have a much higher likelihood of long-term survival than those diagnosed when the disease has spread to distant sites, an occurrence known as metastasis.

Cancer health disparities are another pressing challenge posed by cancer, as highlighted in the AACR Cancer Disparities Progress Report 2020( 14 ).

The National Cancer Institute (NCI) defines cancer health disparities as adverse differences in cancer measures such as number of new cases, number of deaths, cancer-related health complications, survivorship and quality of life after cancer treatment, screening rates, and stage at diagnosis that exist among certain population groups ( 15 ) Cancer Health Disparities Definitions – National Cancer Institute [Internet]. [cited 2019 Jun 19] (see sidebar on U.S. Cancer Health Disparities ).

Cancer health disparities are experienced by many segments of the U.S. population (see sidebar on Which U.S. Population Groups Experience Cancer Health Disparities? ). The African American population is one group that has long shouldered a disproportionate burden of cancer ( 5 ) Siegel RL, Miller KD, Jemal A. Cancer statistics, 2020. CA Cancer J Clin [Internet]. 2020; ( 18 ) ( 20 ) DeSantis CE, Miller KD, Goding Sauer A, Jemal A, Siegel RL. Cancer statistics for African Americans, 2019. CA Cancer J Clin [Internet]. 2019 [cited 2019 Feb 15]; . For example, in 1993, the overall cancer death rate for African American adults was 33 percent higher than it was for white adults. Encouragingly, this disparity had narrowed to 17 percent by 2017, the last year for which these data are available, because the overall cancer death rate decreased more rapidly among African American adults than it did among white adults from 1993 to 2017. Another sign of progress toward eliminating disparities in outcomes between African Americans and whites is that there was a greater increase in 5-year cancer survival for African Americans compared with whites from 2011 to 2014 ( 21 ). As a result, the disparity in 5-year cancer survival for African Americans compared with whites narrowed from 8.2 percent to 7.7 percent during that period. Despite the progress, the burden of overall cancer mortality is still significantly higher among African Americans compared with whites ( 5 ) Siegel RL, Miller KD, Jemal A. Cancer statistics, 2020. CA Cancer J Clin [Internet]. 2020; ( 18 ) ( 20 ) DeSantis CE, Miller KD, Goding Sauer A, Jemal A, Siegel RL. Cancer statistics for African Americans, 2019. CA Cancer J Clin [Internet]. 2019 [cited 2019 Feb 15]; ( 21 ).

Racial and ethnic minorities, including African Americans, not only shoulder a disproportionate burden of cancer, but also are shouldering a disproportionate burden of the ongoing COVID-19 pandemic, further highlighting stark inequities in health care. Disparities in health care are among the most significant forms of racial inequality and injustice, and it is imperative that everyone play a role in eradicating the social injustices that are barriers to health equity, which is one of our most basic human rights.

Identifying, quantifying, and understanding the causes of health disparities, including cancer health disparities, is a vital step toward developing and implementing strategies to eliminate these disparities. Current knowledge of the complex and interrelated factors that contribute to cancer health disparities is discussed in detail in the AACR Cancer Disparities Progress Report 2020 ( 14 ) (see sidebar on Why Do U.S. Cancer Health Disparities Exist? ). For racial and ethnic minorities, adverse differences in many, if not all, of these factors are directly influenced by structural and systemic racism. New insights obtained through research, including basic research using samples from all U.S. population groups, through the participation of individuals from all these groups in clinical trials, and through increased collaboration among all stakeholders will allow us to make major strides toward eliminating cancer for all.

The public health challenge posed by cancer will grow considerably in the United States and around the world in the coming decades unless we develop and effectively implement improved strategies for cancer prevention, early detection, and treatment ( 12 ) Ferlay J, Ervik M, Lam F, Colombet M, Mery L, Piñeros M, Znaor A, Soerjomataram I, Bray F (2018). Global Cancer Observatory: Cancer Tomorrow. Lyon, France: International Agency for Research on Cancer [Internet] [cited 2019 Jul 29]. (see sidebar on Cancer: A Global Public Health Challenge ).

In the United States, it is predicted that the number of new cancer cases and the number of cancer deaths will rise to more than 2.3 million and almost 1 million, respectively, in 2040 ( 12 ) Ferlay J, Ervik M, Lam F, Colombet M, Mery L, Piñeros M, Znaor A, Soerjomataram I, Bray F (2018). Global Cancer Observatory: Cancer Tomorrow. Lyon, France: International Agency for Research on Cancer [Internet] [cited 2019 Jul 29]. . These sharp increases over the current numbers are anticipated largely because of overall population growth and because the segment of the U.S. population that accounts for most cancer diagnoses—those age 65 and older ( 2 )—is expected to grow from 56 million in 2020 to 81 million in 2040 ( 22 ) Bureau UC. 2017 National Population Projections Tables: Main Series. [cited 2020 Jun 30]; .

Cancer is primarily a disease of aging. In the United States, the median age at diagnosis is 66, and 54 percent of cancer cases are diagnosed in people age 65 and older ( 22 ) Bureau UC. 2017 National Population Projections Tables: Main Series. [cited 2020 Jun 30]; . Progress is being made in reducing the overall U.S. cancer incidence rate, with the most recent data showing that it fell 0.6 percent each year from 2012 to 2016 ( 23 ). However, incidence rates for some types of cancer are increasing among people age 49 and younger at an alarming rate ( 24 ) Siegel RL, Miller KD, Goding Sauer A, Fedewa SA, Butterly LF, Anderson JC, et al. Colorectal cancer statistics, 2020. CA Cancer J Clin [Internet]. 2020;0:1–20. ( 25 ) A B, F S, R B. Prostate Cancer in Young Men: An Emerging Young Adult and Older Adolescent Challenge. Cancer [Internet]. Cancer; 2020 [cited 2020 Jun 30];126. . For example, the colorectal cancer incidence rate among people age 49 and younger increased 2.2 percent each year from 2012 to 2016 ( 24 ) Siegel RL, Miller KD, Goding Sauer A, Fedewa SA, Butterly LF, Anderson JC, et al. Colorectal cancer statistics, 2020. CA Cancer J Clin [Internet]. 2020;0:1–20. . This rise in early-onset colorectal cancer was driven largely by an increase in the colorectal cancer incidence rate among non-Hispanic whites. During the same period, the colorectal cancer incidence rate among those age 65 and older fell 3.3 percent each year. Similar trends have been seen for prostate cancer ( 25 ) A B, F S, R B. Prostate Cancer in Young Men: An Emerging Young Adult and Older Adolescent Challenge. Cancer [Internet]. Cancer; 2020 [cited 2020 Jun 30];126. . For both examples, younger people were more likely to be diagnosed when the cancer had spread to distant sites, data that are being considered as colorectal cancer screening guidelines are reviewed (see sidebar on Consensus Cancer Screening Recommendations for Average-risk Individuals ).

Cancer: A Costly Disease Research: A Vital Investment

The enormous toll of cancer is felt not only through the number of lives it affects each year, but also through its immense economic impact.

In the United States, it is estimated that cancer health care spending was $161.2 billion in 2017, the last year for which these data are available ( 26 ). This does not include the indirect costs of lost productivity due to cancer-related morbidity and death, which were $30.3 billion and $150.7 billion, respectively. Overall, these numbers translate to about 1.8 percent of the country’s gross domestic product.

The economic burden of cancer stands in stark contrast to the amount of money the federal government invests across all areas of medical research. In 2017, the same year that cancer health care spending was $161.2 billion, the budget for the National Institutes of Health (NIH), which is the largest medical research agency in the world, was just $34.15 billion, of which $5.64 billion went to the NCI.

If the number of cancer cases diagnosed each year in the United States increases in the coming decades as anticipated, the direct and indirect costs will also escalate ( 27 ) Mariotto AB, Enewold L, Zhao J, Zeruto CA, Yabroff KR. Medical Care Costs Associated with Cancer Survivorship in the United States. Cancer Epidemiol Biomarkers Prev [Internet]. American Association for Cancer Research; 2020 [cited 2020 Jun 30]; .

The increasing personal and economic burden of cancer highlights the vital need for more transformative research to accelerate the pace of progress. Recent advances, some of which are highlighted in this report, were made as a result of the cumulative efforts of researchers from a diverse array of specialties. Their work is supported in large part by funds from the federal government that are administered through the NIH. The consecutive multibillion dollar increases for the NIH budget from fiscal year (FY) 2016 to FY2020 have helped researchers keep up with the pace of scientific innovation (see Figure 21 ). It is imperative, however, that Congress continue to provide sustained, robust, and predictable increases in investments in the NIH and the NCI, as well as other federal agencies that are vital for fueling progress against cancer such as the FDA and the Centers for Disease Control and Prevention (CDC), in the years ahead (see The AACR Call to Action .)

• A Message from AACR
• Executive Summary
• A Snapshot of a Year in Progress
• Cancer in 2023
• Understanding the Path to Cancer Development
• Reducing the Risk of Cancer Development
• Screening for Early Detection
• Advancing the Frontiers of Cancer Science and Medicine
• Spotlight on Immunotherapy: Pushing the Frontier of Cancer Medicine
• Perspective: Looking to the Future of Immunology
• Supporting Cancer Patients and Survivors
• Envisioning the Future of Cancer Science and Medicine
• Advancing the Future of Cancer Research and Care Through Evidence-based Policies
• AACR Call to Action
• AACR President’s Vision: Future of Cancer Research and Care
• AACR Cancer Progress Report 2023: Steering Committee

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What Research Tells Us about Political Violence

In the United States, it seems that political violence—which can be broadly understood as acts of violence aimed at individuals or property with the intention of affecting or resisting political, social and/or cultural change—is on the rise, with the assassination attempt of Donald Trump in July just the latest example. While the ideals of the United States have always stressed the need for a peaceful democracy, we cannot avoid the fact that this event was by no means a one-off incident.

From the insurrection on January 6, 2021, to the murder of nine Black parishioners in 2015 at the Emanuel African Methodist Episcopal Church in Charleston, South Carolina; from the Oklahoma City bombing in 1995 to the assassinations of Martin Luther King, Jr., Malcolm X, and both John F. and Robert Kennedy; and race massacres in Elaine, Arkansas, and Tulsa, Oklahoma, and scores of earlier events, political violence has been an unfortunately common part of life in the United States for a long time.

What is particularly concerning is that the United States has one of the highest rates of fatalities from political violence among developed countries, based on data from the Armed Conflict Location & Event Data Project , a non-profit, non-governmental agency dedicated to collecting data on political violence around the world. Comparison of the United States, Canada, the United Kingdom, and 26 of the 27 EU countries (data do not exist for Luxembourg) shows that since 2020, the United States has the second highest rate of fatalities from political violence per person, with one fatality per every 1,076,897 people. Only Greece surpasses the United States during this time period with one fatality per every 357,286 people.

These numbers are disturbing, and likely lead many of us to wonder: What is causing this exceptional violence?

This question has been at the heart of substantial political science and peace science research over the last five decades. The answers researchers have arrived at can help guide us on how to minimize political violence and move towards our goal of creating the fairest and most representative democracy possible.

One of the key findings from this research is that a combination of perceived grievances (e.g., believing the group a person identifies with has been wronged by the government or a different group in society), along with a belief that change is not achievable through normal democratic means (e.g., voting) create the atmosphere for political violence. On top of this, once one person or group of people engage in political violence, the likelihood of retaliatory political violence increases .

Luckily, this spiraling of political violence can be reversed. When opportunities to influence governance and politics become more plentiful , those engaging in violence have a tendency to hit the brakes and stop the violence. Put differently, when representative elections exist , society tends to become more peaceful.

With that information in mind, the United States has a huge problem. Based on 11 indicators of the quality of elections, including whether electoral laws favor larger parties or incumbents and whether electoral boundaries discriminate against some parties or incumbents, among others, experts with the Electoral Integrity Project have concluded that the integrity of US elections lags behind dozens of countries in Europe and North America, and many Asian and African countries. More problematically, according to the the V-Dem Project , which surveys experts on democracy around the world, the United States is becoming less representative and more autocratic.

Specifically, the V-Dem Project indicates that the United States has decreased in the last decade on what they call the “Electoral Democracy Index,” which captures the extent to which “clean, free and fair elections” are held, whether residents enjoy “actual freedom of expression,” have access to “alternatives sources of information and association,” whether men and women are equally empowered to vote, and whether policymaking power is vested in elected officials. Maybe more concerning is that in recent years V-Dem data show that violence around elections in the United States is at its worst level since at least before 1900 (V-Dem data begins in 1900). Further still, voter intimidation by the government in the form of violence and repression has dipped to levels the United States hasn’t seen since before the end of Jim Crow.

Increasing fair representation and the operation of democracy in the United States is at the crux of the work of the UCS Center for Science and Democracy. We are using science and research to advocate for real and tangible solutions that will make democracy in the United States fairer and more representative. This should increase the ability of all Americans to participate in governance, reduce the factors that contribute to political violence, and save lives.

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This paper is in the following e-collection/theme issue:

Published on 8.8.2024 in Vol 26 (2024)

Assessing Opportunities and Barriers to Improving the Secondary Use of Health Care Data at the National Level: Multicase Study in the Kingdom of Saudi Arabia and Estonia

Authors of this article:

Original Paper

• Janek Metsallik 1 , MSc   ; 
• Dirk Draheim 2 , PhD   ; 
• Zlatan Sabic 3 , PhD   ; 
• Thomas Novak 4 , BA   ; 
• Peeter Ross 1, 5 , MD, PhD  

1 E-Medicine Centre, Department of Health Technologies, School of Information Technologies, Tallinn University of Technology, Tallinn, Estonia

2 Information Systems Group, School of Information Technologies, Tallinn University of Technology, Tallinn, Estonia

3 Health, Nutrition and Population Global, The World Bank Group, Washington, DC, United States

4 Office of the National Coordinator for Health Information Technology, Department of Health and Human Services, Washington, DC, United States

5 Research Department, East Tallinn Central Hospital, Tallinn, Estonia

Corresponding Author:

Janek Metsallik, MSc

E-Medicine Centre, Department of Health Technologies

School of Information Technologies

Tallinn University of Technology

Akadeemia 15a

Tallinn, 12616

Phone: 372 56485978

Email: [email protected]

Background: Digitization shall improve the secondary use of health care data. The Government of the Kingdom of Saudi Arabia ordered a project to compile the National Master Plan for Health Data Analytics, while the Government of Estonia ordered a project to compile the Person-Centered Integrated Hospital Master Plan.

Objective: This study aims to map these 2 distinct projects’ problems, approaches, and outcomes to find the matching elements for reuse in similar cases.

Methods: We assessed both health care systems’ abilities for secondary use of health data by exploratory case studies with purposive sampling and data collection via semistructured interviews and documentation review. The collected content was analyzed qualitatively and coded according to a predefined framework. The analytical framework consisted of data purpose, flow, and sharing. The Estonian project used the Health Information Sharing Maturity Model from the Mitre Corporation as an additional analytical framework. The data collection and analysis in the Kingdom of Saudi Arabia took place in 2019 and covered health care facilities, public health institutions, and health care policy. The project in Estonia collected its inputs in 2020 and covered health care facilities, patient engagement, public health institutions, health care financing, health care policy, and health technology innovations.

Results: In both cases, the assessments resulted in a set of recommendations focusing on the governance of health care data. In the Kingdom of Saudi Arabia, the health care system consists of multiple isolated sectors, and there is a need for an overarching body coordinating data sets, indicators, and reports at the national level. The National Master Plan of Health Data Analytics proposed a set of organizational agreements for proper stewardship. Despite Estonia’s national Digital Health Platform, the requirements remain uncoordinated between various data consumers. We recommended reconfiguring the stewardship of the national health data to include multipurpose data use into the scope of interoperability standardization.

Conclusions: Proper data governance is the key to improving the secondary use of health data at the national level. The data flows from data providers to data consumers shall be coordinated by overarching stewardship structures and supported by interoperable data custodians.

Introduction

Governments seek guidance and strategic directions for deploying effective, efficient, and reliable mechanisms for the secondary use of data collected in health care provision. While the primary use of digital data in health care institutions has developed well during the last decades, health care systems look to improve their practice for secondary use. The secondary use of data controls the burden of data capture by enabling the reuse of already collected data for alternative purposes. Among others, the categories of secondary data use include improving the patient experience, health care facility management, service planning and benchmarking, policy development, public health, health care financing, research, and business support [ 1 ]. The categories above exploit data traditionally collected in separate data streams and silos. For instance, public health registries or health insurance claims are managed in most countries by dedicated organizations within their databases using specific data collection processes. The siloed approach has led to the duplication of data collection and the waste of health care resources. A report by the Open Data Institute from 2021 concludes that initiatives for health data ecosystems for data reuse are still fragmented in Europe [ 2 ].

Digital data and digitalized processes allow for a change in these practices, making data capture universal and allowing digital health care data sharing for different purposes.

From 2019 to 2021, we conducted projects in the Kingdom of Saudi Arabia and Estonia, assessing health and health care data analytics and developing context-specific recommendations. The governments of both countries were looking to advance their decision-making capabilities due to the digitalization of the flow of health data.

The Project in the Kingdom of Saudi Arabia

The Saudi Health Council (SHC), in cooperation with the World Bank, developed the National Master Plan for Health Data Analytics to guide and provide strategic direction for the deployment of effective, efficient, and reliable mechanisms to share data from the health sector for policy and decision-making [ 3 ].

The government sought to boost the regulatory, institutional, and technical infrastructure, allowing for efficient data collection from health care systems to process and provide appropriate data analytics and business intelligence for policy and decision makers. The project assessed the existing situation and conceptualized the harmonized national health data analytics operational model and the logical architecture, including core elements such as the Health Data Analytics Framework, actors and their roles, and critical processes.

The initial driver for the development was perceived inefficiency and observable delays in producing analytical data products about the country’s health care system. Indirectly, the existing data flow was limiting the ability to produce accurate and timely information for decision-making on many levels of the health care system. The project focused on the requirements of the significant national-level decision makers, including the SHC and management of the health care sectors, namely, Ministry of Health (MoH) Medical Services, National Guard Medical Services, Ministry of Interior Medical Services, and King Faisal Specialist Hospital & Research Center.

The Project in Estonia

The analysis of health and health care data management was part of the Structural Reform Support Service mission of the European Commission, to provide support for the preparation and implementation of growth-enhancing administrative and structural reforms by mobilizing European Union funds and technical expertise. Estonia requested support from the European Commission under Regulation (EU) 2017/825 on the establishment of the Structural Reform Support Program (“SRSP Regulation”) to prepare the Person-Centered Integrated Hospital Master Plan [ 4 ].

The master plan targeted to (1) provide a map of the current hospital system, its ability to supply health care in different specialties, distribution of its physical and human resources, its financial flows, and its mechanisms of governance and information sharing; (2) provide evidence-based estimates of the population needs and the supply of health workforce and health care services and infrastructures; and (3) propose a hospital master plan of sound reforms in the hospital sector in the midterm.

The planning included an assessment of the data sharing mechanisms and governance. Current and future organizations delivering the data for decision-making throughout the hospital network were analyzed. The scope of the analysis included data for the national-level health care management and policy (Ministry of Social Affairs [MoSA]), public health (National Institute for Health Development [NIHD]), health care financing (Estonian Health Insurance Fund [EHIF]), and health care service management and clinical decision-making (hospitals and family health centers).

The Tension Between Demand and Supply of Information

In both cases, the digitalization of the health and medical data flows should improve the quality of the decisions. Data in health care are often produced and consumed by different stakeholders. They need to cross the boundaries of specialties, institutions, regions, and sectors to deliver informational value to data consumers so that they can make decisions. From the point of view of decision makers, the place of capture has a surplus, and the place of decision-making has a shortage of information. The tension of disbalance generates the need for data flow: data consumers need data from data producers to extract information for decision-making.

The stakeholders in health care that need data for decision-making, such as governmental organizations, payers, policy makers, and others, feel the tension and try to resolve it. They request data providers to collect and deliver data for each type of consumption. As the providers cannot always align the requirements, they often capture the same information multiple times. The uncoordinated design of data flows has manifested in duplication, gaps, and delays.

The projects analyzed health care data supply and demand for data for different health care decisions. The analysis aimed to provide a better basis for planning data management organization and infrastructure.

In both cases, the client saw issues producing proper analytical data products. In the Kingdom of Saudi Arabia case, the focus was on the reports on public health and health care system indicators. The Estonian terms underlined person centricity and efficacy, which introduced the requirement to study data sharing for clinical decision-making, patient engagement, hospital management, health care system planning, health care policy, and health care funding. To assess the situation and plan for better data sharing, we found it essential to map the providers and consumers and evaluate the usability and use of data for decision-making. The assessment of health care data systems focused on the data purpose, flow, and sharing ( Figure 1 ).

The Aim of the Study

This study aimed to report problems and outcomes from the 2 distinct projects that assess the potential of secondary use of health care data and support of governmental decisions and to map the common thread of thought to apply in similar circumstances. We looked for the matching elements of the problems and the results of the 2 assessments.

The respective terms of the projects regulated the work conducted in the Kingdom of Saudi Arabia and Estonia. In general, both projects had to deliver an initial assessment and recommendations for improvement. In the Kingdom of Saudi Arabia, the project concluded with the National Master Plan for Health Data Analytics [ 3 ]. In Estonia, the results were integrated into the Person-Centered Integrated Hospital Master Plan [ 4 ].

This section describes the framework of definitions and research methods that we developed for the projects.

Mapping Data Sharing Purposes

Digitalization shall enable gains in the effectiveness of decision-making (better inputs, better decisions) and increase the efficiency of data processing (timely and cost-effective delivery of data), resiliency against missing or erratic data, and sustainability of the data management (agility of the data models and infrastructure). One can assess digital health effectiveness by its ability to generate data (inputs) for decision-making. The World Health Organization (WHO) lists various health care performance indicators for management and policy decisions. The WHO has divided the core health indicators into 4 domains: health status, risk factors, service coverage, and health systems [ 5 ]. The system of indicators supports rationalized alignment of priorities and harmonization of investments for various levels of health care systems. We used the system of indicators to model health data completeness. The indicators allowed us to cross-check if the needs of the decision makers were fully met. We analyzed the ability of a health care system to coordinate the data required for the indicators.

The purpose of the collected data is to support health care activities ( Figure 1 ). The activities depend on input data and generate new data, including clinical, managerial, financial, and others. The organizational or human actors of studied ecosystems perform these activities. For example, a hospital manager preparing the financial plans consumes data about the average cost per patient case. On the basis of the WHO indicator domains, the studies searched for evidence of data consumption in public health status and risks, health care activity, resources, funding, and clinical decision-making and research. In the Kingdom of Saudi Arabia case, we paid less attention to the clinical side, mainly focusing on the national public health indicators and the health care system. In the Estonian case, in addition to clinical decision-making, we investigated patient-side decision-making, and patient engagement was considered a separate health care activity.

Mapping Data Flow

Digital health ecosystems facilitate data flows to resolve data provision and consumption tension. The projects in Kingdom of Saudi Arabia and Estonia mapped the roles, procedures, structures, terminologies, and master data involved in coordinating the flow. We built catalogs of organizations that capture health care data (data providers) and organizations that receive health care data (data consumers). The interoperability between the sources and targets may be organized in many ways, either via bilateral point-to-point agreements or multilateral standards-based agreements. The parties share registries of identifiable objects, such as persons, legal entities, locations, services, and others. We checked the availability of data standards and master data registries. For greater secondary use, multilateral data-sharing agreements shall be in place. If we identified standards-based data sharing, we also examined the governing organization around the standards. Depending on the data governance setup, 1 or more entities would coordinate the data requirements between data consumers and providers, govern information assets, design and enforce data standards, and monitor the continuity of the data flow. The responsibility for the coordination is called data stewardship. The data policy’s task is to regulate the distribution of data governance responsibilities and enable control over them. For example, a data policy may state that licensed health care institutions shall follow the data collection standards set by a single stewardship organization; this may enforce a data flow that makes a log of activities and resources spent on those activities available to health care management and funding stakeholders.

Mapping Data Sharing

Data sharing is based on the organizational and technical capability that transports data between decision-making locations. We gathered information about the data management platforms, the organizations running the platforms, and the standards supporting data exchange. A data manager or custodian is responsible for maintaining a technical environment and a database structure for data sharing. Regardless of the topology of a data sharing system, centralized or distributed, the data shall be delivered to the correct location at the right time for decision-making. For example, a public registry of laboratory results may transport data between the laboratories, health care providers, and researchers.

The discipline of enterprise information management defines the elements of data flow and sharing. Data governance roles, namely, data policy, data stewardship, and data custodianship, have been used for structuring enterprise information management [ 6 , 7 ]. In the case of the studied projects, we looked for the data governance structures in the national-level health care data organizations.

Assessing the Maturity of Capability

Various capability maturity models support assessing health care information systems [ 8 ]. Many maturity models focus on a specialty; a type of organization; or an area of function (hospital management, diagnostic images, and more). Some models focus on the digital health system’s ability to connect sources and targets of data sharing. The Health Information Sharing Maturity Model (HISMM) from the Mitre Corporation suggests assessing a digital health system from the perspective of 11 capability areas, which cover technology, use, and governance perspectives [ 9 ].

The HISMM model has 2 dimensions: 11 characteristics and 5 maturity levels. The maturity level reflects the level of development or goal achievement regarding a capability. If each launch of a data flow requires the creation of a new organization, the flow has a project-based (1) capability level. At the expert-based (2) capability level, existing organizations (experts) can process a data flow. At the standard-based (3) capability level, data flow can be initiated by involving several organizations providing the same level of service. The data flow at the performance-based (4) level constantly produces indicators of the success of its activities. The data flow is at the learning-based or optimizing (5) level if the performance indicators trigger continuous improvement [ 9 ]. For the assessment, we enhanced the HISMM levels with the maturity criteria from ISO 33020 and Capability Maturity Model Integration (CMMI), which guide the assessment of capability maturity of processes related to information systems [ 10 , 11 ]. For example, when level 3 of ISO 33020 requires that “a standard process, including appropriate tailoring guidelines, is established and maintained,” we looked for such evidence in our desktop research and in the interview notes.

The characteristics dimension of the HISMM model contains 11 characteristics. The 11 characteristics form a checklist for developing data flows. According to these 11 characteristics, analyzing which additions must be added to the use, technology, or governance organization to increase capacity is possible.

On the basis of our experience with the Kingdom of Saudi Arabia, we introduced the HISMM as an additional tool for assessment in Estonia. Despite our interest, it was economically unreachable for us to redo the assessment in the Kingdom of Saudi Arabia only to compare the HISMM assessment results.

In Estonia, we structured maturity evidence based on the stakeholders’ purpose. The structuring allowed the study to analyze the variation in the inputs collected from different decision makers. For example, we were looking for the differences in the maturity of health care management, clinical decision-making, and patient engagement, where all stakeholders may need data about health care resources.

The Framework of the Assessments

The complete framework provides categories for mapping the capabilities and assessing the maturity of those capabilities. Textbox 1 below provides a summary of the categories.

The framework drove the capture and analysis of the findings in both projects. We asked the interviewees about the purposes of using health data and the means they used to manage the data. Together with the interview participants, we investigated the stakeholders, information systems, standards, technologies, and platforms on which their data flows were based. For example, we asked the hospitals’ management about the indicators they used in decision-making. Then, we asked the statisticians and IT specialists to describe the sources of the data and the data processing activities.

Data purpose

• Public health status
• Public health risks
• Health care activity
• Health care resources
• Health care funding
• Clinical decision-making
• Clinical research
• Data providers
• Data consumers
• Data stewardship
• Data standards
• Data policy
• Master data

Data sharing

• Data platforms
• Data custodianship
• Data exchange standards

Stakeholder purpose

• Patient engagement
• Clinical decisions
• Health care management
• Research and monitoring
• Health care policy

Capability maturity

• Level 5. Optimizing
• Level 4. Performance
• Level 3. Standards
• Level 2. Experts
• Level 1. Projects

Capability characteristic

1. Data quality

2. Data transport

3. Data security

4. Interoperability

5. Usability

6. Alignment

7. Participation

9. Data governance

10. Stakeholder governance

11. Sustainability

Project Activity in the Kingdom of Saudi Arabia

For the situational analysis in the Kingdom of Saudi Arabia, we completed a comprehensive institutional review of the current data systems in the health sector, with an emphasis on how these data were collected and could be routinely made available to the responsible authorities.

We assessed the processes at the institutional, operational, and technical levels. To understand the architectural options for integrated data management, we analyzed the current development plans and statuses, including a rapid assessment of existing computerized information systems, services, and tools. Specifically, we assessed the critical processes for data management and use, system architectures, database architectures, key relevant data sets, data exchange capabilities, geospatial tools, and system platforms available in the health system. The assessment identified the health system’s critical information systems, data sets, and exchange capabilities.

The assessment methodology included primary and secondary sources, including interviews with stakeholders. The research team interviewed policy makers and stakeholders during a sequence of missions in 2019. The stakeholders included the national-level health care coordination (SHC) and management of the sectors, namely, MoH Medical Services, National Guard Medical Services, Ministry of Interior Medical Services, and King Faisal Specialist Hospital & Research Center. The project included an in-depth web search of written information and web-based resources on digital health tools and systems for data exchange and analytics. To improve the primary stakeholders’ capacity and achieve a common understanding of master plan goals, a seminar about global experiences and examples of technical solutions took place during the first technical mission.

Project Activity in Estonia

The team evaluated Estonian hospitals’ health data and information exchange levels. The method combined interviews and desk research. The aim was to understand the value of health and medical information sharing capabilities to stakeholders, identify gaps in funding, and relate governmental activities to strategies and frameworks.

This rapid assessment used semistructured interviews. Institutional, operational, and technical experts described their view on Estonian digital health care data governance; health data flows; information security; and existing computerized information systems, services, and tools. The analysis considered the hospitals part of a more comprehensive data sharing network. Hence, participants provided inputs about both internal and external data sharing. Specifically, interviews with the stakeholders touched on the critical processes for data management and use, system architectures, database architectures, key relevant data sets, data exchange capabilities, and system platforms available in the health system, considering the current use of the EHIF, the Estonian Health Information System (EHIS), and the NIHD databases.

The data sharing network under discussion included health care institutions, public authorities, and other data users, for example, researchers and patients (from the point of view of hospitals). As the interviews covered the involved participants in both data provider and data consumer roles, the captured evidence also touches on the existing and potential use of data for primary and secondary purposes. On multiple occasions, the interviewed stakeholders were able to share insights into the integration of health data exchange and services with social and labor market services. The assessment covered vital information systems, data sets, and data exchange capabilities of the Estonian health care system.

Altogether 9 stakeholders were interviewed, including hospitals (North Estonia Medical Centre, Tartu University Clinic, Pärnu Hospital, Viljandi Hospital, Põlva Hospital, and East Viru Central Hospital) and specialists from the NIHD, the EHIF, and the Estonian Society of Cardiology. Before the interview, we provided the interviewees with a comprehensive set of questions divided into 11 categories according to the capability attributes of the HISMM. The length of the interviews ranged from 1.5 to 2 hours. Usually, the group consisted of 4 to 5 persons, including the head or vice-head of the institution; chief specialists of clinical, IT, service development departments; health accounting; and statistics.

Ethical Considerations

This study compiled the framework, methods, and findings from the past project deliverables, which were available publicly or per request from the respective owners. The projects in the Kingdom of Saudi Arabia and Estonia assessed material available from public sources and interviews. The included organizations-appointed interview participants. The projects did not compensate for the participation. We informed the participants about the purpose of the assessment and used the interview results anonymously. The study team never recorded any health data during the interviews or site visits. This study includes statements on the possible limitations of the conclusions.

Summary of the Methodology

Table 1 summarizes the methods used by the projects in the Kingdom of Saudi Arabia and Estonia.

a Not applicable.

Digital Health Landscape in the Kingdom of Saudi Arabia

The Kingdom of Saudi Arabia health care information system encompasses several stakeholders, including primary health care (PHC), hospitals under different jurisdictions, the SHC, the MoH, public health research, quality management, and others. The project looked at the health care system as a whole.

The Kingdom of Saudi Arabia has a population of 35 million, divided between 21.4 million Saudis and 13.6 million non-Saudis. The annual population growth rate was 2.38 in 2020, which dropped slightly from 3.19 in 2010. Part of it can be accounted for by the lowered fertility rate of 1.9 in 2018 and 2.98 in 2010 [ 12 ]. The population aged >65 years was 3.4% in 2019, and it is expected to grow to 6% by 2030, which makes it a country with a relatively young population compared with its neighbors in West Asia [ 13 ].

The health care system in the Kingdom of Saudi Arabia is mainly funded via the MoH of the Kingdom of Saudi Arabia, which covers 287 hospitals with 45,180 beds, 2257 PHC centers, and 973 specialized medical facilities. In addition to MoH, the governmental health care sector includes providers under the Armed Forces Medical Services, National Guard Medical Services, Ministry of Interior Medical Services, King Faisal Specialist Hospital & Research Center, Royal Commission Hospitals, ARAMCO Hospitals, and Ministry of Education. The total number of hospital beds in other government sectors is 13,989, divided among 50 hospitals. The private sector in the Kingdom of Saudi Arabia runs 167 hospitals with 19,427 beds [ 14 ].

In 2000, the Kingdom of Saudi Arabia institutionalized the development of electronic health care as a governmental committee. In 2005, the government established the Saudi Association for Health Informatics, which focused on the growing awareness of electronic health among health care professionals [ 15 ]. The effort put into awareness and education has supported the adoption of health IT. Still, the adoption could have been more cohesive, and the use of electronic health systems has been limited [ 16 ]. A multiple-case study based on a survey (conducted in 2010) of 6 of the seemingly most advanced medical cities of the Kingdom of Saudi Arabia concluded that inadequate data management policies and procedures, resistance to change, the low analysis of data, and lack of accreditation impact the health IT adoption. The study revealed a need to introduce a national regulator and establish a data exchange plan through a national health information network [ 17 ]. The MoH of the Kingdom of Saudi Arabia has invested in the growth of health information exchange on all health care levels. Some researchers have found that the MoH’s focus on information exchange between the health care system participants supports the greater adoption of electronic health records. The sharing adds more value to the data and increases the motivation for quality data capture and improvement of health IT tooling [ 18 ].

The SHC, established in 2014, is a successor to the Health Services Council, established in 2002. The role of the SHC is to coordinate and integrate health care stakeholders regardless of the type of ownership or the sector of governance. At the time of the project, the SHC included 16 representatives from several ministries, national health care agencies, education institutions, and health care institutions. The SHC governs some national health centers, including the National Center for Health Information [ 19 ].

The National Health Information Center (NHIC) was established in 2013, with the mission to organize health information exchange among all health sectors and related parties, to develop and customize terminology and data exchange standards, to create and supervise telehealth networks, to create national disease registries, and to provide health information to the beneficiaries [ 20 ].

Digital Health Landscape in Estonia

Estonia has a population of 1.3 million, which has declined since 1990. The annual population growth rate has been approaching 0 (from the negative side) in the past years. However, the growth rate has been lifted by migration as the fertility rate of 1.6 per woman is less than that required for reproduction [ 21 ]. The population aged >65 years was 20% in 2019 and is expected to grow to 23.5% by 2030, slightly above the average of 18.8% and 21.8% in the region of Northern Europe [ 22 ].

All health care institutions operate under private law in Estonia. General practitioners are private entrepreneurs or limited companies. At the same time, hospitals are joint-stock companies or not-for-profit foundations licensed by the Health Board and provide various inpatient or outpatient medical or nursing care. In total, 1428 health care institutions were covered by the National Institute of Health Development statistics in 2019. There are 52 hospitals with 6788 beds, 436 family health centers, 490 dental care providers, 317 specialized outpatient medical care, and others [ 23 ]. The health care system in Estonia is governed by the MoSA. The system’s structure includes agencies of the MoSA (eg, State Agency of Medicines, Health Board, NIHD, and Center of Health and Welfare Information Systems); independent public bodies (EHIF); (mainly publicly owned) hospitals under private regulation; private PHC units; and various nongovernmental organizations and professional associations. The financing is organized chiefly through an independent single public-payer EHIF, including ambulance services [ 24 ]. The government regulation establishes a list of regional, central, general, local, and rehabilitation hospitals, a total of 19 hospitals, to ensure uniform access to health care services. These hospitals are entitled to receive the necessary construction, renovation, and reprofiling investments from the government budget. With the hospitals mentioned in the list, EHIF concludes treatment financing contracts for at least 5 years based on the type of hospital listed and the corresponding operating license.

The MoSA of Estonia covers public health from the state budget. Private, primarily out-of-the-pocket spending was 22.7% in 2016 [ 21 ].

Health care data are divided between 14 primary national-level sources, in-house sources of health care service providers, and databases of research institutions. In addition to inherent health care data sources, the e-government platform enables the secondary use of public registers for health care needs. For example, the Population Register, managed by the Estonian Police and Border Guard Board, is the source of personal data for patient management. The Health Board manages public registers of health care professionals and health care institutions. The State Agency of Medicines manages registers of drugs, medicinal products, and pharmacies. The EHIF collects reimbursement-related health data, registers the status of insured persons, and manages digital prescriptions. The Center of Health and Welfare Information Systems maintains a significant platform for health data sharing, the EHIS [ 25 ] that encompasses the whole country, registers all residents’ health history from birth to death, and is based on the e-government infrastructure.

Since 2008, the Digital Health Platform (DHP) has been operating in Estonia, which shares the health care data of the entire country’s residents in a secure e-government environment, both between authorized health care workers and between a health care worker and a natural person. The DHP, whose official name is the EHIS, aims, among other things, to process the data related to the area of health care for entry into and performance of contracts for the provision of health services; for ensuring the quality of health services and the rights of patients; and for the protection of public health, including for the upkeep of registers and the organization of health statistics and the management of health care [ 24 ].

Assessment Results in the Kingdom of Saudi Arabia

In the case of the Kingdom of Saudi Arabia, the project delivered 2 consecutive components that led to the recommendations for decision makers to boost the regulatory, institutional, and technical infrastructure within the country’s health care system, thereby allowing for the efficient collection of health care data.

First, we performed the situational analysis of health and health care data management. The delivered assessment report provided a brief institutional review of the Kingdom of Saudi Arabia health care system’s data management and identified vital information systems, analytical data sets, and data exchange capabilities.

The assessment report revealed that data reporting and analytics procedures, standards, and forms in health care should be coordinated and coherent across the ministries with health care institutions under their jurisdiction and with the MoH and SHC.

On the basis of the review, the report gave recommendations for the long-term institutional, organizational, architectural, and technical redesign of health care data analytics to move from static, fragmented, and incomplete data sets to rapid, reliable, and dynamic data processing, exchange, extraction, and consolidation. We used these recommendations as the basis for the development of the second deliverable, the Master Plan for National Health Data Analytics; it is a policy document that describes the regulatory, institutional, and technical infrastructure that allows the efficient collection of digital health and health care data from health care systems to process and provide appropriate data analytics and business intelligence for policy and decision makers. The SHC of the Kingdom of Saudi Arabia approved the Master Plan in 2020.

The Master Plan outlines a framework for data, roles, and processes. The framework considers analytical data sets, health care indicators, reports, metadata, and catalogs as parts of the data dimension. The framework of roles supports the governance of the data and information flows and endorses the strategic value of the analytical data. The Master Plan defines the specific organizations that shall fulfill the defined roles. The process dimension outlined a set of workstreams for analytical data. It described a path to produce needed policies, objectives, data definitions, analytical product definitions, and standards.

The Master Plan evaluated multiple options for assigning the data governance roles. The final recommendation was to share the responsibilities between the units of the SHC: the policy and strategy management to the SHC Board, data stewardship and analytics to the National Health Analytics Department, data custodianship to the National Health Observatory at the NHIC, and standardization to the Data Standardization Unit at the NHIC.

To operationalize the framework, the Master Plan proposes 3 years to transition responsibilities and develop institutional capacity on all levels. After that, all actors at the national and subnational levels shall adapt to the general and national data analytics frameworks.

Assessment Results in Estonia

In Estonia, the study used interviews to collect inputs for the assessment. The researchers adopted the HISMM and reorganized the notes using capability attributes and stakeholder purpose. The purpose dimension aimed to summarize the capabilities or flows that the interviews covered. The interview content covered the purpose, flow, and sharing. We asked the interviewees to cover the topics for all the data governance roles of their institutions. For example, depending on a specific capability discussed, a hospital can be a data provider, consumer, custodian, and steward. The notes were analyzed for evidence of maturity and labeled accordingly. The method resulted in a 3D matrix with dimensions for stakeholder purpose, capability attributes, and maturity level ( Figure 2 ).

The researchers estimated the maturity of the information sharing to be on levels 2 to 4. Level 2 represents a situation where the information flow stands on the existing expertise, and the flow outcomes are repeatable. Level 3 indicates the existence of standards and procedures that allow new providers to enter the market. On level 4, the assessed ecosystem shall demonstrate an ability to measure the achievement of the information sharing goals.

The assessment suggests, also visualized in Figure 3 , that the improvement focus should be on data quality, transport, and stakeholder governance. From the perspective of stakeholder purpose, the flows that feed decisions on health care policy show the lowest maturity. The maturity matrix indicates that the data and information may circulate in silos of governance; experts are needed (level 2) to support the data to reach the policy makers. The below-average estimates on data and stakeholder governance hint that the coordination of the data flows is mostly implicit. The interviewees missed the explicit rules and coordination of the secondary use of data. The above-average estimates on data for clinical purposes indicate the success of standardizing patient data flows via the EHIS.

The project in Estonia combined the HISMM into the framework of analytics. The role of the HISMM was to provide insight into the improvement potential of the established flow of data. The findings of the maturity assessment allowed the stakeholders’ viewpoints to be drawn to and the specific characteristics of the flows to be analyzed. The HISMM is a valuable tool for cases where the primary data policy, governance structure, and platform are already in place. Analysis of the specific characteristics provides a basis for targeted improvements. When a data flow misses expectations, an assessment may reveal a specific characteristic that limits the flow. The summary of the HISMM results in Estonia shows the need to improve the focus on data quality, data transport, data and stakeholder governance, and process alignment ( Figure 3 ).

The study in Estonia concluded with a recommendation to align the roles of data providers, consumers, stewards, and custodians for the expanded multipurpose data flows. The current document-based health information sharing model shall transform into a shared space of Integrated Care Records. We reported the assessment results as part of the Person-Centered Integrated Hospital Master Plan, which also included reports of teams of other specialists.

Comparison of the Assessments

We conducted the assessments according to the framework discussed earlier in this study. To map the elements of data sharing, we interviewed stakeholders using the shared data for the purposes defined by the scope of the projects. We also captured the evidence of the stakeholders interacting with specific data sharing platforms.

The data collection in the Kingdom of Saudi Arabia took place 1 year before the project in Estonia. We mostly replicated the methodological experience from the Kingdom of Saudi Arabia in Estonia, except that we introduced an additional assessment tool, the HISMM ( Table 2 ).

The analysis of the projects in the Kingdom of Saudi Arabia and Estonia demonstrates the challenges of coordinating data flows on a distributed data sharing system. Even if the health care systems in the 2 countries are coordinated differently, in both cases, the conclusions focus on the need to strengthen data flow stewardship ( Table 3 ).

The conclusions advised the governments to introduce governance policies, which would clarify the responsibilities of the stakeholders. Proper management of the responsibilities of data stewards would increase the value of data providers’ contributions and the value of the custodians’ data. Figure 4 illustrates our conceptual understanding of the data governance roles and their relationships, which we used as a tool to map the roles of the existing or future organizations in our recommendation.

Current data governance in the studied countries follows the vertical model of stewardship, where the data consumers coordinate the information flows for their own needs. Most consumers have also established their own data management or custodian organizations. Notable exceptions are the national databases and message exchange platforms, which support data consumption by multiple institutions. For example, the EHIS manages data consumed by the network of health care providers, patients, and health care registries. A pervasive stewardship function shall increase the secondary use of data.

a EMR: electronic medical record.

b EHR: electronic health record.

c Not applicable.

d HISMM: Health Information Sharing Maturity Model.

e MoH: Ministry of Health.

a SHC: Saudi Health Council.

c EHIS: Estonian Health Information System.

d EMR: electronic medical record.

Principal Findings

The study maps the common thread of thought from 2 distinct projects in the Kingdom of Saudi Arabia and Estonia, assessing the potential of secondary use of health care data and supporting governmental decisions. The projects apply comparable frameworks and methods, allowing the comparison of the barriers, opportunities, and conclusions. The findings include both the frameworks used and the conclusions made. The framework of assessment defines 2 dimensions of analysis. First, there is the need to identify and improve data sharing flows between data providers and consumers. The analysis investigates multiple purposes of data, data and exchange standards, stakeholders’ governance, and shared data management platforms. Second, the framework considers the maturity of the data sharing implementation. The maturity assessment measures the level of institutionalization of health data sharing. The second part of the framework was included and applied only to the project in Estonia.

The assessment revealed opportunities and barriers in the secondary use of health data. Starting with the opportunities, the included institutions demonstrated high levels of digitization in the workplace. In the Estonian case, we also experienced advanced integration platforms and interoperability standards implemented nationally. The latter has supported the development of sophisticated solutions for national electronic health record and clinical decision support. However, the countries have maintained a fragmented organization of data stewardship, which has not been able to coordinate the need for data. In both cases, the assessments concluded with a recommendation to implement pervasive data stewardship to align the need for data.

While many countries have digitalized information necessary for clinical work and described the data relatively well, especially in most European countries and North America, unified routines and applications for the secondary use of digital data in health care are largely still being planned.

In Sweden, more than 100 health care quality registries collect individual-based clinical data for research and improvement of health care delivery [ 26 ]. In Estonia, 6 medical registries and databases collect, process, and distribute data about health and medicine [ 27 ]. Studies propose that clinical quality registers can be cost-effective and yield significant investment returns [ 28 ]. The number and quality of the registries indicate success in the secondary use of health care data. The registries also introduce data capture, integration, and delivery costs for secondary use. These professional specialty or national quality registries are often developed and managed in silos, leading to high maintenance costs and challenges in interoperability.

Regardless of the advanced information systems in hospitals, the health care system in the Kingdom of Saudi Arabia spends considerable time and resources collecting statistical data. There is much manual processing due to the lack of standards for integration and semantics. The same applies to Estonia; despite the common health data interoperability standards and transport system, secondary use of health care data is often in silos and needs additional effort. In the Kingdom of Saudi Arabia and Estonia, the data consumers coordinate their needs directly with the data providers, reinforcing the traditional model of form-based reporting. The form-based approach introduces duplication at the data capture; one may call it secondary capture. To avoid resource wasting and duplication, collecting the data consumers’ need shall be part of the standards of primary data capture.

In Estonia, the advanced semantic interoperability of the clinical documents shared via the EHIS enables the automation of clinical decision support [ 29 - 32 ]. Such features include drug-drug interaction alerting, context-driven suggestions of clinical guidelines, and automatic patient summaries based on clinical documents. These features increase the use of data but only inside the vertical of clinical decision-making. The EHIS could also facilitate data flows for public health, health care management, and clinical research decision-making.

The stakeholders of health care data need to cooperate through a strategic digitalization process. Often, the participants are not aware of the discontinuity of the data flow. The study in Estonia indicated that the participants were relatively satisfied with the data management tools and their engagement in the flow. Instead, they reported problems with data quality and governance. The users expressed their frustration regarding duplicate data capture but could not relate it to the low alignment of the processes. We hypothesize that the interview results indicate disruptions in the data flow. The respondents struggled to find source data to fill in the data entry forms for secondary use. Designing and managing a flow that connects data capture with a single consumer is relatively easy, ensuring satisfaction with the tools and participation. Only a helicopter view of the landscape of data needs shows the shortcomings of governance and the chronic waste of capturing the same data repeatedly. Efficiency in the secondary use of data starts from the health care policy establishing clear goals and management.

Single-purpose capture of data and single-purpose databases are indicators of the low secondary use of health care data. The data flow design should follow the principle of “collect once and use multiple times.” The studied cases reveal the barriers built between the domains of information purpose. The health care system extends over 6 ministries in the Kingdom of Saudi Arabia. It takes a long time and heavy work to combine data across the borders of the governance verticals. In Estonia, where the organization is more straightforward, data collection for different purposes is still split between different data consumers, resulting in independent data flow designs without proper interoperability. For example, health care providers must simultaneously record the exact data for clinical decisions, management, funding, statistics, and research. The new policy shall require the unification of the demand of data consumers into a single standard of data capture.

The analysis of health data sharing challenges in the Kingdom of Saudi Arabia and Estonia demonstrates that the digitization of the workplaces, integration of information systems, and advanced semantic interoperability are insufficient for secondary use on a large scale. A prerequisite for secondary use is a health care policy that emphasizes the need for the continuity of the data flow. The health policy should address governance of the data and stakeholders without introducing central bottlenecks for innovation. The policy should guide parties to map the impacts of their data processing and increase the value of their data through greater secondary use. A health data sharing system shall reward the measurable secondary use of data assets.

Advances in the digitization of health data and integration of information systems open the way to the digitalization of health care processes. Shared data enables the coordination of activities of a digital process. Stewards and custodians must govern health care data through the diverse organizations, workplaces, and information systems landscape. Data governance conceptualizes and carries out stewardship responsibilities based on data access, custodianship, and use policies [ 33 ]. The conceptual framework for data governance by Abraham et al [ 6 ] suggests structural, procedural, and relational mechanisms. The structural and relational mechanisms include establishing clear organizational responsibility and communication. The governments in demand for greater secondary use of health care data shall establish data policy with precise coordinating mechanisms.

We saw that digitalizing data providers and consumers is insufficient for efficient secondary use of data. There is a need for a DHP that enables data and information sharing. However, having a DHP only for clinical data is insufficient. For secondary use, the stewardship must include the requirements of all targeted consumers. This recommendation is also very much in line with the observation from a 2021 report that calls for more substantial public-patient participation in the secondary use of health data [ 2 ].

There is an ever-growing demand for better data and information for decision-making. Modern health care and research depend on data from various domains, including education, environment, and social care. It is an ongoing effort to analyze and integrate the new demand for data.

Limitations

The study reports the findings from 2 projects from 2 countries. The findings present certain commonalities but still have a limited generalizability for different contexts. Countries or regions searching for advice may present circumstances that demand noticeably different strategies for their digital health improvement. It is also essential to understand the role of the frameworks when trying to replicate the results. For practical reasons, a solid framework is essential for such projects, as effective planning, execution, and analysis require a rigid structure. However, the choice of a framework indicates the researcher’s focus and may lead to a limited space of findings. The studied projects develop policy suggestions for health data governance on the national level. Controlled empirical validation of the suggested policies is nearly impossible. The conclusions mainly depend on the internal validity of the research, where we build on the experience of the involved stakeholders and findings from similar experiments.

Conclusions

In this study, we have analyzed 2 projects that assessed and provided advice for the national-level improvement of the secondary use of health care data. The study provided an overview of the projects’ backgrounds, frameworks, methods, and results. Finally, we discussed the main advice from the projects. The study shows that 2 high-income countries with very different health care systems have comparable issues with the secondary use of health care data. National-level secondary use shall build on an overarching data policy that enables horizontal stewardship to coordinate requirements of a diverse landscape of health care data consumers.

Acknowledgments

The project’s client in the Kingdom of Saudi Arabia was the Saudi Health Council, and the project funding came from the World Bank. The Ministry of Social Affairs ordered the project in Estonia and received funding from the European Union Structural Reform Support Program. The authors would like to thank all the participants in this study.

Authors' Contributions

JM and PR were the main contributors to both studied projects, and ZS was a leading contributor in the case of the Kingdom of Saudi Arabia. DD worked on the structure and methodology of the study. TN, one of the leading developers of Health Information Sharing Maturity Model (HISMM), contributed to the required details and reviewed the results concerning HISMM adoption.

Conflicts of Interest

None declared.

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Abbreviations

Edited by S Ma, T Leung; submitted 05.10.23; peer-reviewed by A Civit, A Gangadhara Rao; comments to author 15.03.24; revised version received 03.05.24; accepted 03.05.24; published 08.08.24.

©Janek Metsallik, Dirk Draheim, Zlatan Sabic, Thomas Novak, Peeter Ross. Originally published in the Journal of Medical Internet Research (https://www.jmir.org), 08.08.2024.

This is an open-access article distributed under the terms of the Creative Commons Attribution License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work, first published in the Journal of Medical Internet Research (ISSN 1438-8871), is properly cited. The complete bibliographic information, a link to the original publication on https://www.jmir.org/, as well as this copyright and license information must be included.

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How Grocery Stores Should Respond to the Growth of Online Markets

• Marshall Fisher
• Santiago Gallino

Lessons from Trader Joe’s, Wegmans, and Walmart.

During 2020-21 online grocery shopping soared from 3.4% to double digits as Covid-19 made customers reluctant to go into stores. Post Covid, online grocery shopping is still high, forecasted by Forrester (2021) to hit 10.4% in 2024. How will grocery retailers service this new demand stream? What they should not do is continue the common model of picking from their store shelves for free if the customer picks up the order. Compared to customers shopping in the store and going through checkout, the authors’ analysis shows that this more than doubles labor requirements and destroys all profit. Instead, they need to choose one of three models: 1) Double down on the traditional in-store model 2) Offer online services to those specific customers who are ready to pay extra for the convenience, either as service charges or higher product prices 3) Become more efficient at online by fulfilling from select store backrooms using automation.

Grocery retailers face a challenge: What to do with the online channel, which is growing and popular with a segment of their customers but is hugely unprofitable? Based on research we have conducted in the last three years, we offer three other options in this article.

• MF Marshall Fisher is the UPS Professor in the Operations, Information, and Decisions Department of the University of Pennsylvania’s Wharton School and a codirector of the school’s Fishman-Davidson Center for Service and Operations Management .
• Santiago Gallino is the Charles W. Evans Distinguished Faculty Scholar and an associate professor in the Operations, Information, and Decisions Department the University of Pennsylvania’s Wharton School and a codirector of the school’s Fishman-Davidson Center for Service and Operations Management.

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Informing and Evaluating Policy to Further Health Equity: Key Takeaways from ARM

An AcademyHealth member’s perspective on her most memorable policy-oriented 2024 Annual Research Meeting sessions.

Baltimore did not disappoint! While each attendee has their own list of “most impactful” sessions, I have taken on the difficult task of reviewing just a few. As a policy analyst interested in improving health and well-being among historically marginalized populations, I’ll recap a fraction of the many ARM sessions pertaining to health disparity-related research and policy work. Below, I highlight information from three sessions, describing: 1) how a successful child health program demonstrated its ROI and became a policy priority across the U.S., 2) how researchers can better meet the needs of policymakers, and 3) an evaluation demonstrating the positive outcomes associated with a public health policy.

Promoting Healthy Parenting in Primary Care: Evidence for Vulnerable Pediatric Populations

This session featured three presentations describing parenting interventions delivered in primary care settings. These interventions ( Help Me Grow , Prescription for Play , and The Incredible Years ) were all successfully implemented in safety-net clinics, and participants described program outcomes and policy implications. Dr. Paul Dworkin outlined the Help Me Grow program, an intervention that identifies children at risk for developmental issues and connects them to supports. Help Me Grow, first piloted in 1997, has been adopted in over 30 states, and shows a return on investment (ROI) between $3 and $17 saved per dollar spent. Dr. Dworkin emphasized the importance of demonstrating success to policymakers and other stakeholders, ensuring programs are supported and funded. Dr. Dworkin recommends proximate measures, which can demonstrate initial program success and show that efforts will continue to strengthen families and communities in the future. Dr. Dworkin also mentioned that current policy discussions on alternative payment models are an opportunity to advocate for their inclusion of important outcome measures. Illustrating progress and ROI leads to policymakers “investing to reinvest” in your evidence-based program. 

My key takeaway from this session was Dr. Dworkin’s explanation of how Help Me Grow’s programmatic and policy goals have evolved, an important concept for all program implementation specialists, researchers, and policymakers. He stated that their goals have moved from helping kids achieve outcomes to helping strengthen families and communities to help kids achieve outcomes.

Insights from the Frontlines: Policymakers’ Perspectives on Research Needs and Priorities

In this session, panelists, including state policymakers and a Centers for Medicare and Medicaid Services (CMS) representative, discussed research priorities and how researchers can best serve policymakers. This session offered a fascinating glimpse into the real-world policy realm, and began with panelists answering the simple question, “How do you use research?” Chad Perman, Director of the Maryland Primary Care Program Office , stressed the importance of providing timely research that is tailored to state, not national, priorities. Dr. Jen Piver-Renna from the Virginia Joint Commission on Health Care explained that research needs vary by legislative session, with most research occurring between sessions. She stated that state legislators want concrete data on costs and impacts of a policy, yet sometimes these data do not exist or are not applicable to a specific setting.

The panelists also discussed best practices in literature reviews. Mr. Perman stressed the importance of including what works on the ground rather than in theory. He used the example of integrated behavioral health care and primary care (IBH), saying we know IBH works but solo providers want to know how they themselves can offer IBH in their own practices. He added that single-page evaluation summaries are helpful, and Dr. Emma Sandoe from North Carolina Medicaid agreed, stating the importance of a well-written executive summary.

When asked about current research gaps, the panelists mentioned the foster care crisis, Medicaid and the justice system, workforce shortages, rapid cycle evaluation, and Tribal health disparities. My biggest takeaway from this session was the importance of concise research findings, with all panelists stressing their preference for research summaries in the form of a few bullet points, a “key takeaways” sheet, or something that they can explain to policymakers in under two minutes.

Policies and Programs to Improve Access to Care and Outcomes for Children and Families

In this session, researchers outlined fascinating work on policies and their effects on health outcomes. In “Impact of State Child Access Prevention Laws on Suicide By Firearm Among Youth and Young Adults,” Everytown for Gun Safety epidemiologist Dr. Kathryn Fingar reviewed her team’s comparison of states with firearm child access prevention (CAP) policies to control states with no CAP policies. They found that in states with these policies, which impose penalties on adults if a child gains access to a firearm, all youth suicides decreased between 2000 and 2021, including an 18 percent decrease in gun suicides. This study has obvious policy implications, including the effectiveness of CAP laws in decreasing youth suicide rates. Dr. Fingar’s team also identified disparities in youth suicide, including higher gun suicide rates among youth who identify as Black or American Indian/Alaska Native compared to white youth. Strikingly, 63 percent of suicides among Black youth involved a firearm, and racial disparities are increasing. My biggest takeaway here was the importance of targeting feasible policies. For example, CAP laws often have bipartisan support, can be easier to implement than other firearm policies, and clearly demonstrate improved health outcomes.

While I’ve recapped just a few sessions, ARM offered countless opportunities to hone my health service research and policy skills. This year’s content had something for everyone, and complemented AcademyHealth’s advocacy priorities (promoting research and science innovation; health systems improvement, resilience, and capacity; and reducing health disparities). As we anticipate the 2025 ARM in Minneapolis, I look forward to using this year’s takeaways to improve health care for the vulnerable and underserved, in the U.S. and globally, through research, education, and policy.

FILTER BY YEAR

5th August – Threat Intelligence Report

For the latest discoveries in cyber research for the week of 5th August, please download our Threat Intelligence Bulletin .

TOP ATTACKS AND BREACHES

• American blood donation center OneBlood has been a victim of a ransomware attack that caused disruption to its software system, affecting operations across more than 350 hospitals in Florida, Georgia, and the Carolinas. The attack has forced the organization to operate at reduced capacity and manually process blood donations, leading to inventory shortages.
• American pharmaceutical company Cencora has confirmed that a cyber-attack that occurred in February 2024 resulted in the exfiltration of sensitive personal and medical data, including PII and PHI, primarily maintained by a subsidiary providing patient support services. The company has notified potentially impacted individuals, but the exact number affected was not disclosed.
• The City of Columbus, Ohio has experienced a ransomware attack that resulted in the disruption of multiple city services and a potential access to sensitive city information. The Rhysida ransomware gang has claimed responsibility, threatening to leak 6.5TB of alleged data, including employee credentials, emergency services data, access to city cameras and more.

Check Point Harmony Endpoint and Threat Emulation provide protection against this threat (Ransomware.Win.Rhysida; Ransomware.Wins.Rhysida)

• A Taiwanese government-affiliated research institute has been a victim of a data breach conducted by the Chinese state-sponsored group APT41. The attack involved the use of ShadowPad and Cobalt Strike malware to gain unauthorized access to research data and execute commands.

Check Point Harmony Endpoint and Threat Emulation provide protection against this threat (Trojan.Wins.APT41.ta.*; Trojan.Win.APT41; APT.Win.APT41; RAT.Wins.Shadowpad.*; RAT.Win.ShadowPad; Trojan.Wins.Cobaltstrike.tayc.*; Trojan.Wins.Cobaltstrike; Trojan.Win.Cobaltstrike)

• Russian information security firm Avanpost has confirmed a cyber-attack that resulted in the encryption of over 400 virtual machines and physical workstations, the destruction of more than 60TB of data, and the leak of 390GB of valuable information. The attack was claimed by the pro-Ukrainian hacker group Cyber Anarchy Squad. The hackers shared some of the allegedly leaked data on Telegram and Mega, though the authenticity of this data has not been verified.
• HSA provider HealthEquity has suffered a data breach that led to the exposure of personal and protected health information of 4.3M individuals. The compromised data includes names, addresses, Social Security numbers, payment card details, medical data and more.
• World’s largest silver producer Fresnillo PLC has disclosed a cyber-attack that led to unauthorized access to its IT systems and data. Despite the breach, business operations remain unaffected with no material operational or financial impact reported.

VULNERABILITIES AND PATCHES

• Check Point Research found that over 20K Ubiquiti cameras and routers are vulnerable to amplification attacks and privacy risks due to exposed UDP ports 10001 and 7004. This vulnerability, CVE-2017-0938, allows unauthorized access to sensitive device information, such as platform names and IP addresses, which can be exploited for both technical and social engineering attacks.
• Microsoft warns of active exploitation of VMware ESXi vulnerability, CVE-2024-37085, which allows ransomware groups to gain administrative access through an Active Directory integration authentication bypass. Ransomware gangs, including Storm-0506 and Storm-1175, have exploited this vulnerability to deploy ransomware such as Akira and Black Basta.
• Researchers have uncovered a critical ITW exploit of Proofpoint’s email protection service, dubbed “EchoSpoofing”, which allows attackers to send millions of perfectly spoofed phishing emails. This vulnerability bypasses SPF and DKIM authentication by leveraging Proofpoint’s infrastructure, making emails appear as if they are from reputable brands such as Disney, Nike, IBM, and Coca-Cola.

THREAT INTELLIGENCE REPORTS

• Researchers have unveiled a sophisticated malvertising campaign exploiting social media platforms. Attackers hijack social media pages to mimic popular AI photo editor apps, and posting malicious links to bogus AI editor sites that trick users into downloading a compromised endpoint management utility. Payloads like Lumma Infostealer are executed, exfiltrating sensitive data, including cryptocurrency wallet files, browser data, and password manager databases.

Check Point Harmony Endpoint and Threat Emulation provide protection against this threat (InfoStealer.Wins.Lumma.ta.*; InfoStealer.Win.Lumma; Trojan.Wins.Lumma.ta.*; Trojan-Downloder.Win.Lumma)

• Researchers have identified a rise in the abuse of TryCloudflare Tunnels for delivering remote access trojans (RATs). The attackers use Cloudflare tunnels to create temporary infrastructure, allowing them to remotely access data and resources without creating an account. The campaigns, observed from February to July 2024, involve URLs or attachments that execute scripts to download Python-based malware such as Xworm, AsyncRAT, VenomRAT, GuLoader, and Remcos.

Check Point Harmony Endpoint and Threat Emulation provide protection against this threat (Worm.Wins.Xworm; Worm.Win.XWorm; RAT.Win.Asyncrat; RAT.Win.Asyncrat.glmw; RAT.Wins.AsyncRAT.ta.*; RAT.Win.Venom; Dropper.Win.GuLoader; RAT.Win.Remcos; RAT.Wins.Remcos; RAT.Wins.Remcos.ta.*)

• Researchers have discovered a large-scale, Android-targeted SMS stealer campaign active since February 2022, identifying over 107K malware samples. The malware tricks users into sideloading deceptive apps, which then exfiltrate SMS messages, including OTPs, by communicating with Command-and-Control servers via various evolving methods. This campaign has impacted victims in 113 countries, using over 2,600 Telegram bots and targeting over 60 global brands.

Check Point Harmony Mobile provides protection against this threat

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Election 2024: Key Facts About Latino Voters

• Juliana Phan,
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• Xalma M. Palomino

In 2024, Latino voters will have the power to decide the next presidential election and which party will control Congress. Growing by almost 4 million eligible voters and representing half of the total growth in eligible voters since 2020, the potential impact of Latinos on elections is more significant than ever.

Ucla lppi will release a series of data briefs utilizing the  latino data hub to focus on latino voters in critical states and counties, starting with the swing states of arizona and nevada. subsequent data analyses will be published through the summer and fall, including latino voter profiles for california, pennsylvania, and florida., key facts about latino voters in arizona, key facts about latino voters in nevada, contributors.

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Collection  12 March 2021

2020 Top 50 Life and Biological Sciences Articles

We are pleased to share with you the 50 most downloaded Nature Communications articles* in the life and biological sciences published in 2020. (Please note we have a separate collection on the Top 50 SARS-CoV-2 papers .) Featuring authors from around the world, these papers highlight valuable research from an international community.

Browse all Top 50 subject area collections here .

* Data obtained from SN Insights (based on Digital Science's Dimensions) and has been normalised to account for articles published later in the year.

Vitamin D metabolites and the gut microbiome in older men

Here, the authors investigate associations of vitamin D metabolites with gut microbiome in a cross-sectional analysis of 567 elderly men enrolled in the Osteoporotic Fractures in Men (MrOS) Study and find larger alpha-diversity correlates with high 1,25(OH)2D and high 24,25(OH)2D and higher ratios of activation and catabolism.

• Robert L. Thomas
• Lingjing Jiang
• Deborah M. Kado

The misuse of colour in science communication

The accurate representation of data is essential in science communication, however, colour maps that visually distort data through uneven colour gradients or are unreadable to those with colour vision deficiency remain prevalent. Here, the authors present a simple guide for the scientific use of colour and highlight ways for the scientific community to identify and prevent the misuse of colour in science.

• Fabio Crameri
• Grace E. Shephard
• Philip J. Heron

Effect of gut microbiota on depressive-like behaviors in mice is mediated by the endocannabinoid system

The gut microbiota may contribute to depression, but the underlying mechanism is not well understood. Here the authors use a mouse model of stress induced depression to demonstrate that behavioural changes conferred by fecal transplant from stressed to naïve mice require the endocannabinoid system.

• Grégoire Chevalier
• Eleni Siopi
• Pierre-Marie Lledo

The default network of the human brain is associated with perceived social isolation

Here, using pattern-learning analyses of structural, functional, and diffusion brain scans in ~40,000 UK Biobank participants, the authors provide population-scale evidence that the default network is associated with perceived social isolation.

• R. Nathan Spreng
• Emile Dimas
• Danilo Bzdok

Non-invasive early detection of cancer four years before conventional diagnosis using a blood test

Patients whose disease is diagnosed in its early stages have better outcomes. In this study, the authors develop a non invasive blood test based on circulating tumor DNA methylation that can potentially detect cancer occurrence even in asymptomatic patients.

• Xingdong Chen
• Jeffrey Gole

Deep learning suggests that gene expression is encoded in all parts of a co-evolving interacting gene regulatory structure

Regulatory and coding regions of genes are shaped by evolution to control expression levels. Here, the authors use deep learning to identify rules controlling gene expression levels and suggest that all parts of the gene regulatory structure interact in this.

• Christoph S. Börlin
• Aleksej Zelezniak

A systematic review of antibody mediated immunity to coronaviruses: kinetics, correlates of protection, and association with severity

Antibody mediated immunity to SARS-CoV-2 will affect future transmission and disease severity. This systematic review on antibody response to coronaviruses, including SARS-CoV-2, SARS-CoV, MERS-CoV and endemic coronaviruses provides insights into kinetics, correlates of protection, and association with disease severity.

• Angkana T. Huang
• Bernardo Garcia-Carreras
• Derek A. T. Cummings

Biomineral armor in leaf-cutter ants

Biomineral armour is known in a number of diverse creatures but has not previously been observed in insects. Here, the authors report on the discovery and characterization of high-magnesium calcite armour which overlays the exoskeletons of leaf-cutter ants.

• Chang-Yu Sun
• Cameron R. Currie

Senolytics prevent mt-DNA-induced inflammation and promote the survival of aged organs following transplantation

Organ transplantation involving aged donors is often confounded by reduced post-transplantation organ survival. By studying both human organs and mouse transplantation models, here the authors show that pretreating the donors with senolytics to reduce mitochondria DNA and pro-inflammatory dendritic cells may help promote survival of aged organs.

• Jasper Iske
• Midas Seyda
• Stefan G. Tullius

Fasting mimicking diet as an adjunct to neoadjuvant chemotherapy for breast cancer in the multicentre randomized phase 2 DIRECT trial

Preclinical evidence suggests that a fasting mimicking diet (FMD) can make cancer cells more vulnerable to chemotherapy, while protecting normal cells. In this randomized phase II clinical trial of 131 patients with HER2 negative early stage breast cancer, the authors demonstrate that FMD is safe and enhances the effects of neoadjuvant chemotherapy on radiological and pathological tumor response.

• Stefanie de Groot
• Rieneke T. Lugtenberg
• Dutch Breast Cancer Research Group (BOOG)

Aerobic microbial life persists in oxic marine sediment as old as 101.5 million years

The discovery of aerobic microbial communities in nutrient-poor sediments below the seafloor begs the question of the mechanisms for their persistence. Here the authors investigate subseafloor sediment in the South Pacific Gyre abyssal plain, showing that aerobic microbial life can be revived and retain metabolic potential even from 101.5 Ma-old sediment.

• Yuki Morono
• Fumio Inagaki

The auxin-inducible degron 2 technology provides sharp degradation control in yeast, mammalian cells, and mice

Auxin-inducible degron systems can be leaky and require high doses of auxin. Here the authors establish AID2 which uses an OsTIR1 mutant and the ligand 5-Ph-IAA to overcome these problems and establish AID-mediated target depletion in mice.

• Aisha Yesbolatova
• Yuichiro Saito
• Masato T. Kanemaki

Origin and cross-species transmission of bat coronaviruses in China

Bats are a likely reservoir of zoonotic coronaviruses (CoVs). Here, analyzing bat CoV sequences in China, the authors find that alpha-CoVs have switched hosts more frequently than betaCoVs, identify a bat family and genus that are highly involved in host-switching, and define hotspots of CoV evolutionary diversity.

• Alice Latinne
• Peter Daszak

Multivariate genomic scan implicates novel loci and haem metabolism in human ageing

Ageing phenotypes are of great interest but are difficult to study genetically, partly due to the sample sizes required. Here, the authors present a multivariate framework to combine GWAS summary statistics and increase statistical power, identifying additional loci enriched for aging.

• Paul R. H. J. Timmers
• James F. Wilson
• Joris Deelen

A microsporidian impairs Plasmodium falciparum transmission in Anopheles arabiensis mosquitoes

Mircobial symbionts of mosquitoes can affect transmission of human pathogens. Here, Herren et al . identify a microsporidian symbiont in Anopheles gambiae that impairs transmission without affecting mosquito fecundity or survival.

• Jeremy K. Herren
• Lilian Mbaisi
• Steven P. Sinkins

Gene editing and elimination of latent herpes simplex virus in vivo

Herpes simplex virus establishes lifelong latency in ganglionic neurons, which are the source for recurrent infection. Here Aubert et al. report a promising antiviral therapy based on gene editing with adeno-associated virus-delivered meganucleases, which leads to a significant reduction in ganglionic HSV loads and HSV reactivation.

• Martine Aubert
• Daniel E. Strongin
• Keith R. Jerome

A predictive index for health status using species-level gut microbiome profiling

A biologically-interpretable and robust metric that provides insight into one’s health status from a gut microbiome sample is an important clinical goal in current human microbiome research. Herein, the authors introduce a species-level index that predicts the likelihood of having a disease.

• Vinod K. Gupta
• Jaeyun Sung

Bacterial nanotubes as a manifestation of cell death

Bacterial nanotubes and other similar membranous structures have been reported to function as conduits between cells to exchange DNA, proteins, and nutrients. Here the authors provide evidence that bacterial nanotubes are formed only by dead or dying cells, thus questioning their previously proposed functions.

• Jiří Pospíšil
• Dragana Vítovská
• Libor Krásný

Gut microbiota mediates intermittent-fasting alleviation of diabetes-induced cognitive impairment

Intermittent fasting (IF) has been shown beneficial in reducing metabolic diseases. Here, using a multi-omics approach in a T2D mouse model, the authors report that IF alters the composition of the gut microbiota and improves metabolic phenotypes that correlate with cognitive behavior.

• Zhigang Liu
• Xiaoshuang Dai

Transient non-integrative expression of nuclear reprogramming factors promotes multifaceted amelioration of aging in human cells

Aging involves gradual loss of tissue function, and transcription factor (TF) expression can ameliorate this in progeroid mice. Here the authors show that transient TF expression reverses age-associated epigenetic marks, inflammatory profiles and restores regenerative potential in naturally aged human cells.

• Tapash Jay Sarkar
• Marco Quarta
• Vittorio Sebastiano

Mitochondrial TCA cycle metabolites control physiology and disease

Mitochondrial metabolites contribute to more than biosynthesis, and it is clear that they influence multiple cellular functions in a variety of ways. Here, Martínez-Reyes and Chandel review key metabolites and describe their effects on processes involved in physiology and disease including chromatin dynamics, immunity, and hypoxia.

• Inmaculada Martínez-Reyes
• Navdeep S. Chandel

A deep learning model to predict RNA-Seq expression of tumours from whole slide images

RNA-sequencing of tumour tissue can provide important diagnostic and prognostic information but this is costly and not routinely performed in all clinical settings. Here, the authors show that whole slide histology slides—part of routine care—can be used to predict RNA-sequencing data and thus reduce the need for additional analyses.

• Benoît Schmauch
• Alberto Romagnoni
• Gilles Wainrib

Circadian regulation of mitochondrial uncoupling and lifespan

Disruption of different components of molecular circadian clocks has varying effects on health and lifespan of model organisms. Here the authors show that loss of period extends life in drosophila melanogaster.

• Matt Ulgherait
• Mimi Shirasu-Hiza

Circadian control of brain glymphatic and lymphatic fluid flow

Glymphatic function is increased during the rest phase while more cerebrospinal fluid (CSF) drains directly to the lymphatic system during the active phase. The water channel aquaporin-4 supports these endogenous, circadian rhythms in CSF distribution.

• Lauren M. Hablitz
• Virginia Plá
• Maiken Nedergaard

Brain-inspired replay for continual learning with artificial neural networks

One challenge that faces artificial intelligence is the inability of deep neural networks to continuously learn new information without catastrophically forgetting what has been learnt before. To solve this problem, here the authors propose a replay-based algorithm for deep learning without the need to store data.

• Gido M. van de Ven
• Hava T. Siegelmann
• Andreas S. Tolias

Single-cell RNA-seq reveals that glioblastoma recapitulates a normal neurodevelopmental hierarchy

Glioblastoma is thought to arise from neural stem cells. Here, to investigate this, the authors use single-cell RNA-sequencing to compare glioblastoma to the fetal human brain, and find a similarity between glial progenitor cells and a subpopulation of glioblastoma cells.

• Charles P. Couturier
• Shamini Ayyadhury
• Kevin Petrecca

Deep learning for genomics using Janggu

Deep learning is becoming a popular approach for understanding biological processes but can be hard to adapt to new questions. Here, the authors develop Janggu, a python library that aims to ease data acquisition and model evaluation and facilitate deep learning applications in genomics.

• Wolfgang Kopp
• Altuna Akalin

Versatile whole-organ/body staining and imaging based on electrolyte-gel properties of biological tissues

Tissue clearing has revolutionised histology, but limited penetration of antibodies and stains into thick tissue segments is still a bottleneck. Here, the authors characterise optically cleared tissue as an electrolyte gel and apply this knowledge to stain the entirety of thick tissue samples.

• Etsuo A. Susaki
• Chika Shimizu
• Hiroki R. Ueda

Sestrins are evolutionarily conserved mediators of exercise benefits

Exercise improves metabolic health and physical condition, particularly important for health in aged individuals. Here, the authors identify that Sestrins, proteins induced by exercise, are key mediators of the metabolic adaptation to exercise and increase endurance through the AKT and PGC1a axes.

• Myungjin Kim
• Alyson Sujkowski
• Jun Hee Lee

Synergistic effect of fasting-mimicking diet and vitamin C against KRAS mutated cancers

Fasting diets are emerging as an approach to delay tumor progression and improve cancer therapies. Here, the authors show that the combination of fasting-mimicking diet with vitamin C decreases tumor development and increases chemotherapy efficacy in KRAS-mutant cancer.

• Maira Di Tano
• Franca Raucci
• Valter D. Longo

Single-cell RNA sequencing demonstrates the molecular and cellular reprogramming of metastatic lung adenocarcinoma

Understanding the mechanisms that lead to lung adenocarcinoma metastasis is important for identifying new therapeutics. Here, the authors document the changes in the transcriptome of human lung adenocarcinoma using single-cell sequencing and link cancer cell signatures to immune cell dynamics.

• Nayoung Kim
• Hong Kwan Kim
• Hae-Ock Lee

A deep learning system accurately classifies primary and metastatic cancers using passenger mutation patterns

Some cancer patients first present with metastases where the location of the primary is unidentified; these are difficult to treat. In this study, using machine learning, the authors develop a method to determine the tissue of origin of a cancer based on whole sequencing data.

• Gurnit Atwal
• PCAWG Consortium

Single-cell RNA-sequencing of differentiating iPS cells reveals dynamic genetic effects on gene expression

Studying the genetic effects on early stages of human development is challenging due to a scarcity of biological material. Here, the authors utilise induced pluripotent stem cells from 125 donors to track gene expression changes and expression quantitative trait loci at single cell resolution during in vitro endoderm differentiation.

• Anna S. E. Cuomo
• Daniel D. Seaton
• Oliver Stegle

Trajectory-based differential expression analysis for single-cell sequencing data

Downstream of trajectory inference for cell lineages based on scRNA-seq data, differential expression analysis yields insight into biological processes. Here, Van den Berge et al. develop tradeSeq, a framework for the inference of within and between-lineage differential expression, based on negative binomial generalized additive models.

• Koen Van den Berge
• Hector Roux de Bézieux
• Lieven Clement

Large-scale genome-wide analysis links lactic acid bacteria from food with the gut microbiome

Here, Pasolli et al. perform a large-scale genome-wide comparative analysis of publicly available and newly sequenced food and human metagenomes to investigate the prevalence and diversity of lactic acid bacteria (LAB), indicating food as a major source of LAB species in the human gut.

• Edoardo Pasolli
• Francesca De Filippis
• Danilo Ercolini

Genetic history from the Middle Neolithic to present on the Mediterranean island of Sardinia

Ancient DNA analysis of early European farmers has found a high level of genetic affinity with present-day Sardinians. Here, the authors generate genome-wide capture data for 70 individuals from Sardinia spanning the Middle Neolithic to Medieval period to reveal relationships with mainland European populations shifting over time.

• Joseph H. Marcus
• Cosimo Posth
• John Novembre

Sex and APOE ε4 genotype modify the Alzheimer’s disease serum metabolome

Sex and the APOE ε4 genotype are important risk factors for late-onset Alzheimer’s disease. In the current study, the authors investigate how sex and APOE ε4 genotype modify the association between Alzheimer’s disease biomarkers and metabolites in serum.

• Matthias Arnold
• Kwangsik Nho
• Gabi Kastenmüller

Integrative pathway enrichment analysis of multivariate omics data

Multi-omics datasets pose major challenges to data interpretation and hypothesis generation owing to their high-dimensional molecular profiles. Here, the authors develop ActivePathways method, which uses data fusion techniques for integrative pathway analysis of multi-omics data and candidate gene discovery.

• Marta Paczkowska
• Jonathan Barenboim

Mitochondrial uncoupler BAM15 reverses diet-induced obesity and insulin resistance in mice

Obesity is a global pandemic with limited treatment options. Here, the authors show evidence in mice that the mitochondrial uncoupler BAM15 effectively induces fat loss without affecting food intake or compromising lean body mass.

• Stephanie J. Alexopoulos
• Sing-Young Chen
• Kyle L. Hoehn

Restriction of essential amino acids dictates the systemic metabolic response to dietary protein dilution

Dietary protein dilution, where protein is reduced and replaced by other nutrient sources without caloric restriction, promotes metabolic health via the hepatokine Fgf21. Here, the authors show that essential amino acids threonine and tryptophan are necessary and sufficient to induce these effects.

• Yann W. Yap
• Patricia M. Rusu
• Adam J. Rose

Multiplexed CRISPR technologies for gene editing and transcriptional regulation

Multiplexed CRISPR technologies have recently emerged as powerful approaches for genetic editing and transcriptional regulation. Here the authors review this emerging technology and discuss challenges and considerations for future studies.

• Nicholas S. McCarty
• Alicia E. Graham
• Rodrigo Ledesma-Amaro

Determining sequencing depth in a single-cell RNA-seq experiment

For single-cell RNA-seq experiments the sequencing budget is limited, and how it should be optimally allocated to maximize information is not clear. Here the authors develop a mathematical framework to show that, for estimating many gene properties, the optimal allocation is to sequence at the depth of one read per cell per gene.

• Martin Jinye Zhang
• Vasilis Ntranos

Sphingolipids produced by gut bacteria enter host metabolic pathways impacting ceramide levels

Ceramides are a type of sphingolipid (SL) that have been shown to play a role in several metabolic disorders. Here, the authors investigate the effect of SL-production by gut Bacteroides on host SL homeostasis and show that microbiome-derived SLs enter host circulation and alter ceramide production.

• Elizabeth L. Johnson
• Stacey L. Heaver
• Ruth E. Ley

Ancient genomes reveal social and genetic structure of Late Neolithic Switzerland

European populations underwent strong genetic changes during the Neolithic. Here, Furtwängler et al. provide ancient nuclear and mitochondrial genomic data from the region of Switzerland during the end of the Neolithic and the Early Bronze Age that reveal a complex genetic turnover during the arrival of steppe ancestry.

• Anja Furtwängler
• A. B. Rohrlach
• Johannes Krause

Brain insulin sensitivity is linked to adiposity and body fat distribution

Brain insulin action regulates eating behavior and whole-body energy fluxes, however the impact of brain insulin resistance on long-term weight and body fat composition is unknown. Here, the authors show that high brain insulin sensitivity is linked to weight loss during lifestyle intervention and associates with a favorable body fat distribution.

• Stephanie Kullmann
• Vera Valenta
• Martin Heni

Macrophages directly contribute collagen to scar formation during zebrafish heart regeneration and mouse heart repair

Macrophages mediate the fibrotic response after a heart attack by extracellular matrix turnover and cardiac fibroblasts activation. Here the authors identify an evolutionarily-conserved function of macrophages that contributes directly to the forming post-injury scar through cell-autonomous deposition of collagen.

• Filipa C. Simões
• Thomas J. Cahill
• Paul R. Riley

Sexual-dimorphism in human immune system aging

Whether the immune system aging differs between men and women is barely known. Here the authors characterize gene expression, chromatin state and immune subset composition in the blood of healthy humans 22 to 93 years of age, uncovering shared as well as sex-unique alterations, and create a web resource to interactively explore the data.

• Eladio J. Márquez
• Cheng-han Chung

Collagen-producing lung cell atlas identifies multiple subsets with distinct localization and relevance to fibrosis

Collagen production by lung cells is critical to maintain organ architecture but can also drive pathological scarring. Here the authors perform single cell RNA sequencing of collagen-producing lung cells identifying a subset of pathologic fibroblasts characterized by Cthrc1 expression which are concentrated within fibroblastic foci in fibrotic lungs and show a pro-fibrotic phenotype.

• Tatsuya Tsukui
• Kai-Hui Sun
• Dean Sheppard

Pathway and network analysis of more than 2500 whole cancer genomes

Understanding deregulation of biological pathways in cancer can provide insight into disease etiology and potential therapies. Here, as part of the PanCancer Analysis of Whole Genomes (PCAWG) consortium, the authors present pathway and network analysis of 2583 whole cancer genomes from 27 tumour types.

• Matthew A. Reyna

Single-cell transcriptomics identifies an effectorness gradient shaping the response of CD4 + T cells to cytokines

Cytokines critically control the differentiation and functions of activated naïve and memory T cells. Here the authors show, using multi-omics and single-cell analyses, that naïve and memory T cells exhibit distinct cytokine responses, in which an ‘effectorness gradient’ is depicted by a transcriptional continuum, which shapes the downstream genetic programs.

• Eddie Cano-Gamez
• Blagoje Soskic
• Gosia Trynka

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Indian Americans: A Survey Data Snapshot

हिन्दी/Hindi

The United States was home to about 4.8 million Indian Americans as of 2022, according to data from the U.S. Census Bureau. Indian Americans account for 20% of the nation’s Asian American population overall.

About two-thirds of Indian Americans (66%) are immigrants, while 34% are U.S. born. And around half of Indian Americans live in just four states: California (20%), Texas (12%), New Jersey (9%) and New York (7%).

The median income among Indian American households was $145,000 in 2022, meaning that half of households headed by an Indian American person earned more than that and half earned less. This is greater than the median household income among Asian Americans overall ($100,000).

Here’s a look at Indian Americans’ views and experiences across a range of topics, including how they think about their own identities, their opinions of the U.S. and India, and how they feel about achieving the American dream.

These findings are based on a nationally representative Pew Research Center survey of 7,006 Asian adults in the U.S. – including 897 Indian Americans – conducted in 2022 and 2023.

Indian Americans describe their identity in a variety of ways . Most say they most often describe themselves as either “Indian” (41%) or “Indian American” (21%). Another 10% usually call themselves “American,” 15% call themselves “Asian” or “Asian American,” and 9% say they most often describe their identity as “South Asian.”

Of the country’s six largest Asian origin groups, Indian adults are the most likely to say they typically describe themselves by their ethnicity alone, without the addition of “American.” Indian Americans are also more likely than the other large Asian origin groups to consider South Asians to be Asian: 91% say this is the case, compared with 67% of Asian Americans overall.

One-in-five Indian Americans say they’ve hidden a part of their heritage – such as cultural or religious practices – from people who are not Asian.

Views of the U.S. and India

The vast majority of Indian Americans (86%) have a favorable view of the U.S. , including 56% who have a very favorable view. Indian Americans also have a largely positive opinion of their ancestral homeland: 76% see India favorably, including 51% who see it very favorably.

Still, most Indian adults in the U.S. say they would not move to India . About two-thirds (65%) say this, while 33% say they would move there. Among those who would move to India, about half (52%) say the main reason they’d do so is to be closer to family.

Achieving the American dream

Most Indian Americans feel that they’re either on their way to achieving the American dream (48%) or have already achieved it (27%). However, 23% say the American dream is out of reach for them.

A 68% majority of Indian American registered voters identify with or lean toward the Democratic Party, and 29% identify with or lean toward the Republican Party. Among Asian American registered voters overall , 62% are Democratic or Democratic-leaning and 34% are Republican or lean to the GOP.

About 46% of all Indian Americans – 2.2 million – were eligible to vote in 2022, according to Census Bureau data. This means they were at least 18 years old and a U.S. citizen through birth or naturalization. The share of Indian Americans who are eligible to vote is slightly lower than the country’s other large Asian origin groups, in part because they are more likely to be immigrants and may not hold U.S. citizenship.

About half of Indian Americans (48%) identify as Hindu . In total, two-thirds of Indian Americans say either that they are Hindu or that they identify with another religion but feel closely connected to Hinduism for other reasons, such as family background or culture.

Another 15% of Indian Americans identify as Christian, 15% are religiously unaffiliated and 8% are Muslim; 11% identify with some other faith.

Photo by Anthony Behar/Sipa via AP Images

This analysis is one in a seven-part series that explores the identities, views, attitudes and experiences of Asian Americans, including the six largest Asian origin groups in the U.S. In these analyses, Asian Americans include those who identify as Asian, either alone or in combination with other races or Hispanic ethnicity.

The six Asian origin groups highlighted in this series – Chinese, Filipino, Indian, Japanese, Korean and Vietnamese Americans – include those who identify with one Asian origin only, either alone or in combination with a non-Asian race or ethnicity. In this series, Chinese adults do not include those who self-identify as Taiwanese. Other Pew Research Center analyses exploring the attitudes and characteristics of Asian origin groups may use different definitions and therefore may not be directly comparable.

This analysis is based on two data sources. The first is Pew Research Center’s 2022-23 survey of Asian American adults, conducted from July 2022 to January 2023 in six languages among 7,006 respondents. The Center recruited a large sample to examine the diversity of the U.S. Asian population, with oversamples of the Chinese, Filipino, Indian, Korean and Vietnamese populations. These are the five largest origin groups among Asian Americans. The survey also includes a large enough sample of self-identified Japanese adults to make certain findings about them reportable. For more details, read the methodology .  

The second data source is the U.S. Census Bureau’s 2022 American Community Survey (ACS) provided through Integrated Public Use Microdata Series (IPUMS) from the University of Minnesota.

Pew Research Center is a subsidiary of The Pew Charitable Trusts, its primary funder. The Center’s Asian American portfolio was funded by The Pew Charitable Trusts, with generous support from The Asian American Foundation; Chan Zuckerberg Initiative DAF, an advised fund of the Silicon Valley Community Foundation; the Robert Wood Johnson Foundation; the Henry Luce Foundation; the Doris Duke Foundation; The Wallace H. Coulter Foundation; The Dirk and Charlene Kabcenell Foundation; The Long Family Foundation; Lu-Hebert Fund; Gee Family Foundation; Joseph Cotchett; the Julian Abdey and Sabrina Moyle Charitable Fund; and Nanci Nishimura.

We would also like to thank the Leaders Forum for its thoughtful leadership and valuable assistance in helping make this survey possible.

The strategic communications campaign used to promote the research was made possible with generous support from the Doris Duke Foundation.

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ABOUT PEW RESEARCH CENTER  Pew Research Center is a nonpartisan fact tank that informs the public about the issues, attitudes and trends shaping the world. It conducts public opinion polling, demographic research, media content analysis and other empirical social science research. Pew Research Center does not take policy positions. It is a subsidiary of  The Pew Charitable Trusts .

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