RADx-UP Program Addresses Data Gaps in Underrepresented Communities

Guest post by Richard J. Hodes, MD, Director, National Institute on Aging, and Eliseo Pérez-Stable, MD, Director, National Institute on Minority Health and Health Disparities, NIH.

A few months into the COVID-19 pandemic, we shared how NIH was working to speed innovation in the development, commercialization, and implementation of technologies for COVID-19 through NIH’s Rapid Acceleration of Diagnostics (RADx) initiative.

Two years later, one of the RADx programs—RADx Underserved Populations (RADx-UP)—reflects on lessons learned that have broken the mold of standard research paradigms to address health disparities.

Use of Common Data Elements

RADx-UP has presented unique challenges in terms of data collection, privacy concerns, measurement standardization, principles of data-sharing, and the opportunity to reexamine community-engaged research. Establishment of Common Data Elements (CDEs)—standardized, precisely defined questions paired with a set of allowable responses used systematically across different sites, studies, or clinical trials to ensure that the whole is greater than the sum of its parts—are not commonly used in community-engaged research. Use of CDEs enables data harmonization, aggregation, and analysis of related data across study sites as well as the ability to investigate relationships among data in unrelated data sets. CDEs can also lend statistical power to analyses of data for small subpopulations typically underrepresented in research.

RADx-UP is a community-engaged research program that builds on years of developing partnerships between communities and scientists. RADx-UP has funded 127 research projects with sites in every state and six U.S. territories as well as a RADx-UP Coordination and Data Collection Center (CDCC). RADx-UP assesses the needs and barriers related to COVID-19 testing and increase access to COVID-19 testing in underserved and vulnerable populations experiencing the highest rates of disparities in morbidity and mortality.

The COVID-19 pandemic necessitated establishing RADx-UP and its associated CDEs with unprecedented speed relying heavily on data elements derived from those already defined in the NIH-based PhenX Toolkit and Disaster Research Response (DR2) resources. The short time frame for this process did not allow for as extensive collaboration and input from RADx-UP investigators and community partners that would have been ideal. Additionally, many researchers, especially community partners engaged in RADx-UP projects, were not familiar with CDE data collection practices. As a result, CDE questionnaires had to be modified as studies progressed to better suit the needs of the consortium and investigators new to CDE collection had to be familiarized with these processes quickly. NIH program officers, NIH RADx-UP and CDCC leadership and engagement impact teams (EITs)—staff liaisons provided by the CDCC that link RADx-UP research teams to testing, data, and community-engagement resources—helped research teams implement and adjust CDE collection, ensured alignment across consortium research teams, and assisted with other data-related issues that arose.

All RADx programs are required to collect a standardized set of CDEs, including sociodemographic, medical history, and health status elements with the intent to provide researchers rapid access to data for secondary research analyses in the RADx Data Hub, the central repository for RADx data. However, implementation of CDEs in the context of underserved communities in the rapidly evolving COVID-19 pandemic presented complex issues for consideration.

Some of these issues included data privacy, the risk of re-identification of underserved and undocumented populations, and data collection burden on participants as well as researchers. The privacy of health data is protected under federal law. The RADx-UP program instituted measures to ensure program participants’ data remain protected and de-identified using a token-based hashing algorithm methodology that allows researchers to share individual-level participant data without exposing personally identifiable information. To address data collection and respondent burden concerns, projects modified questions to allow some flexibility in expanding response options more appropriate to some underserved communities. The CDCC also developed COLECTIV, a digital interface for projects to directly enter data into the data repository and included gateway questions to relieve respondent burden.

Respect for Tribal Data Sovereignty

RADx-UP leadership and investigators recognized that additional considerations for tribal sovereignty, practices, and policies needed to be addressed for projects that include American Indian and Alaska Native (AI/AN) participants. Through consultations with the NIH Tribal Advisory Committee and the broader AI/AN community and meetings with an informal RADx-UP AI/AN project working group established by the CDCC, NIH realized that deposition of tribal data into the RADx Data Hub would not meet the cultural, governance, or sovereignty needs of AI/AN RADx research data. In response, NIH hopes to establish a RADx Tribal Data Repository (TDR) responsible for the collection, protection, and sharing of data collected in AI/AN communities with respect for the practices and policies of Tribal data sovereignty. Applications for the repository have been solicited and NIH hopes to make an award for the TDR sometime in FY23.

Rapid Data Sharing

One of the largest hurdles the RADx-UP program has faced is implementing rapid sharing of research data for secondary analyses and to inform decision-making and public health practices related to the COVID-19 pandemic. RADx-UP research teams are expected to share their data on a timely cadence before data collection ends. This is a far more stringent practice relative to the current standard NIH data-sharing policy that requires data to be shared at the time of acceptance for publication of the main findings from the final data set. NIH and CDCC staff have worked together with the RADx research community to highlight the importance of and compliance with rapid data-sharing. Within the first six months, a total of 69 Phase 1 projects began transmitting CDE data to the RADx-UP CDCC. The COVID-19 pandemic posed a tremendous challenge, and NIH responded by collaborating with vulnerable and underserved communities. This collaboration has opened an unprecedented opportunity to build on a now established foundation for future research to address gaps in understanding the broader social, cultural, and structural factors that influence disparities in morbidity and mortality from COVID-19 and other diseases. Data collection and sharing efforts of the RADx-UP initiative comprise a significant contribution. Collaboration among the NIH, research investigators, and communities impacted by COVID-19 has been the catalyst. To learn more about RADx-UP, please visit a recent journal article available on PubMed.


Dr. Hodes has served as NIA director since 1993, overseeing studies of the biological, clinical, behavioral, and social aspects of aging. He has devoted his tenure to the development of a strong, diverse, and balanced research program focused on the genetics and biology of aging, basic and clinical studies aimed at reducing disease and disability, and investigation of the behavioral and social aspects of aging. Ultimately, these efforts have one goal — improving the health and quality of life for older people and their families. As a leading researcher in the field of immunology, Dr. Hodes has published more than 250 peer-reviewed papers.

Dr. Pérez-Stable practiced primary care internal medicine for 37 years at the University of California, San Francisco before becoming the Director of NIMHD in 2015. His research interests have centered on improving the health of individuals from racial and ethnic minority communities through effective prevention interventions, understanding underlying causes of health disparities, and advancing patient-centered care for underserved populations. Recognized as a leader in Latino health care and disparities research, he spent 32 years leading research on smoking cessation and tobacco control in Latino populations in the United States and Latin America. Dr. Pérez-Stable has published more than 300 peer-reviewed papers.

How Being an ICU Nurse Prepared Me to be NLM Director

In mid-May, at their 2022 National Teaching Institute & Critical Care Exposition in Houston, Texas, I received a great honor from the American Association of Critical Care Nurses (AACN): the AACN Pioneering Spirit Award. I was delighted to receive this prestigious award, which recognizes significant contributions that influence progressive and critical care nursing worldwide and relate to AACN’s values of integrity, inclusion, transformation, leadership, and relationships. I was humbled to receive this award for my work during my tenure as NLM Director, and it’s in large part due to the work that so many NLM employees do every day.

This acknowledgement from AACN is deeply meaningful to me because critical care nursing has been a part of my professional identity for almost 50 years! In 1974, while I was still in nursing school, I was assigned to work as a nursing assistant in the critical care medical unit at Lankenau Medical Center outside Philadelphia. After graduating in 1975, I became part of the nursing team in the surgical intensive care unit (ICU) at the very same hospital.

These early experiences have touched every part of my career, including my role at NLM—the epicenter for biomedical informatics and computational health data science research and the largest biomedical library in the world.

Then: Learning from My Teachers and Colleagues

I learned from Kathy McCauley, cardiac-care nurse extraordinaire, about the importance of the scientific basis of nursing. Nurses’ deep knowledge of physiology, pharmacology, and anatomy enables the bedside critical care nurse to almost instantaneously recognize vital changes in a patient’s medical status and determine just the right interventions to rebalance fluid or improve oxygenation. My colleague and ICU nurse, Nora Kelly, modeled respect for patient dignity that, to this day, shapes my work to support patient self-management using effective computer technologies. Nora showed me that even in the midst of an often hectic, fast-paced ICU environment, there was always time to provide a patient with comfort, help a person into a more comfortable position, or complete basic hygiene and grooming around tubes and monitor wires.

Now: Serving as Your NLM Director

What stands out the most to me now are the lessons about the importance of in-the-moment information processing; interdisciplinary teamwork supported by nurses, physicians, respiratory therapists, pharmacists, social workers, and others; and personal accountability that shape my everyday life as the director of NLM. Delivering high-quality care under extreme levels of uncertainty and risk is the hallmark of critical care. I learned early on that time was of the essence—there was rarely an opportunity to pause and read an article or two as one pondered how to intervene in a physiology cascade that could lead to sudden death.

The insights from these experiences taught me that for information to truly support in-the-moment care, NLM needed to make its resources open and available in machine-readable formats. It is our job to use machine-learning algorithms to make available NLM’s vast repository of biomedical and scientific literature that drives contemporary drug management or clinical guidelines interpretation. NLM invests in research that helps ICU professionals quickly interpret patient charts so they can predict the likelihood of pulmonary embolism diagnosis or track a patient’s probable health outcome trajectory using observations noted in their electronic health record.

NLM in the ICU

ICU patients in hospitals around the country are all supported by the best interprofessional teams that understand the unique aspects of patient care, whether that’s to advance the patient’s progress towards wellness or to provide alternative end-of-life care focused entirely on comfort. Because of the diversity of caregivers and professionals across hospital ICUs, we must acquire, organize, and disseminate the literature to all biomedical professional groups when they need it most.

It is in this spirit that each division in NLM—including our Library Operations team managing our NLM Collection, our MEDLINE Literature Selection Technical Review Committee to impanel experts across many specializations, and our PubMed and PubMed Central with the tools to index and catalog records—accelerates the dissemination of knowledge from many disciplines. Clinicians are required to have deep expertise and stay abreast of new research within their specialty and to recognize potentially valuable literature from other disciplines. In support of this requirement, we organize over 34 million citations by clinical problem and physiological underpinning. That way, no matter what your specialty, each search identifies literature from a wide range of perspectives and refines our “relevance-based results return” according to those patterns most valued by our patrons, as described by NLM’s Best Match algorithm.

Patients often find themselves in the ICU from somewhere else in the health care system and are frequently discharged not to their homes, but to other less-intensive clinical care units. To understand their conditions and efficiently guide their care in a vast, complex, and time-sensitive setting, health care interprofessional teams should understand all ICU clinical information and events so they can translate and transmit that information to the responsible post-discharge teams. This information flow relies on health data standards so that events that occur in one place are well understood in the next. NLM plays an important role by forecasting how health care settings like ICUs will use health data standards to promote interoperability and by shaping the public policies that protect patient records. NLM shares its expertise in data science, health information technologies, and computer science with our fellow federal agencies and with the private sector to make sure patient records are accessible while remaining private and secure.

Connecting the Dots

I remember the enormous intimacy involved in my ICU nursing experience, often including myself and a patient, at times the patient’s family, and certainly every time the rest of the care team. But teamwork only works when each member holds sacred their responsibility to the patient and the care that they require. Personal accountability does not occur in a vacuum; rather, it is molded and shaped through conversations with colleagues, collaborative care-planning rounds, candid postmortem reviews, and quiet heart-to-hearts in the staff lounge. Even these efforts are touched by NLM, from providing literature and guidelines that lay out the various roles of professionals to furnishing our citations repository with the contact information of those authors whose work guides clinical thinking. In this way, NLM becomes a partner for personal accountability.

If only that fledgling ICU nurse from 50 years ago knew that her entire cultural and practical experience was preparing her to direct the most important health science library in the world! Because of who she was as that nurse and who we are as NLM, critical care remains a cornerstone of health care information and systems in best support of all patients. If you have ideas for how NLM can better support the critical care of YOUR patients, please let us know!

Nursing in the Headlines

Every year, we celebrate National Nurses Week between May 6, which is National Nurses Day, and May 12, which happens to be Florence Nightingale’s birthday. If you haven’t picked up a specialty journal or public newspaper in the past few months, you may not know that nursing has made it to the headlines:


Some of us might argue that any press is better than none, and others might say it’s about time that the real story about nurses and nursing become better known. While I believe a little in both perspectives, the real reason I’m glad to see them today is that they depict a much richer, more valid, and more robust story about who and what nurses are and how they serve society.

A recent article in The New York Times stated, “A Shrinking Band of Southern Nurses, Neck Deep in Another Covid Wave.” This news story brings into national view the importance of small, nonprofit safety-net hospitals and the experience of the nurses who work there. Told without romanticizing nurses’ dedication or pointing out their long-suffering compassionate nature, this article tells of the real challenges faced by nurses who want to do good for their communities but are faced with persistent shortages, significant illnesses that could have been avoided, and politically motivated, bureaucratic financial decisions. However, it also tells of the creative problem solving demonstrated by these nurses as they try to meet patient needs and the compassion they provide to their colleagues as they continue, yet another day, to address the needs of many with fewer and fewer resources.

Look at the first three headlines: together, these depict a professional field dedicated to meeting the conditions of its social contract—to provide high-quality patient care—and awash with opportunities for outstanding career growth, and at the same time at risk of losing some of its critical workforce due to unrelenting stress in the workplace. What does this say about nursing? Never has there been such opportunity, but never has the opportunity promised so little.

A beautiful story in March in The New York Times, “Confronting Grief, With Margaret Atwood, in ‘The Nurse Antigone,’” which talks about regular nurses participating with Margaret Atwood in the reading of the play Antigone, provides me with hope and vision. In this rendition, Atwood will play the blind prophet Theophanes and the nurses will be part of the Greek chorus. This story of Antigone’s determination to bury her brother, who died in battle, despite a law forbidding the burial of traitors mirrors the challenges nurses face by attending to those in need despite enormous challenges in acquiring resources needed to provide care, including sufficient time. An ethicist quoted in the article remarks that Antigone’s triumph over Creon’s prohibitions provides an apt mirror of the moral injury with which nurses cope, neither romanticizing their decision nor despairing at their deplorable conditions.

The final headline in the middle of the pack heralds nurses’ awakening to their economic power. The COVID-19 pandemic didn’t create the traveling nurse sector of our profession, but it certainly accelerated its growth across the country. Individual remuneration soared, leaving many nurses with the dilemma to remain as a loyal worker in a long-served institution or move on for financial gain. Hospitals too faced the challenge of differential staff compensation, with highly paid traveling nurse staff working next to more modestly paid existing staff. Fortunately, the perversity of this economic structure has led to hospitals and clinics improving staff nurse compensation, attending to their work conditions, and stabilizing the staffing complement.

As we celebrate National Nurses Week this year, please join me in recognizing the vibrant, rich picture of our profession. We are not unbuffered by these challenging times, and as a profession, we are responding in a way that serves our patients while preserving our profession. Accepting new models of care, innovative career trajectories, and an expanded understanding of how to create compassionate workplaces promises a future in which all nurses can work to the top of their licenses. Let us know how we can help you do this, too!

You Can’t Be What You Can’t See

Every year, International Women’s Day is celebrated across the globe to recognize women’s rights and gender equality. This year’s observance encouraged all people to #BreakTheBias and envision a world that values and celebrates diversity.

Bias results from the complex interplay of experience, cognition, learning, and stigmatization. It shapes the way people make decisions and influences one’s appraisal of what constitutes good and bad. Bias can sometimes be helpful as it provides a quick way to motivate social discourse. However, bias often leads to unfair or discriminatory treatment. The most insidious aspect of bias is that it frequently happens outside of one’s conscious awareness. The only effective way to disrupt the dangerous influence of bias is to persistently raise awareness, challenge assumptions, and enrich the visual cues around the world that highlight the unique and powerful differences between people. Placing oneself in groups and teams with others who are different from ourselves is one starting point.

I’ve been inspired by a phrase I’ve heard several times recently: You can’t be what you can’t see. This phrase is often used to identify the multiplicative impact of creating a diverse workforce. This is pretty inspirational to me! I have often experienced efforts to bring women into leadership positions or to open scientific opportunities to people of color as a strategy that served the individual person — which in itself has many benefits. For the individual, expanded career opportunities provide meaningful work and the opportunity, not only to use one’s talents to advance an enterprise mission, but also gain financial rewards. The teams surrounding these individuals benefits too. Making sure that leadership teams are comprised of people of different genders and who have different life experiences improves our collective thought and creativity. It is important to recognize that these benefits do not arise solely because teams are made up of people who look different or sound different from each other but requires the intentional application of managerial actions that celebrate differences and help individuals build bridges between ways of knowing.

The Secretary of the Smithsonian Institution, Lonnie G. Bunch III, attributed this quote to Sally Ride in an article he wrote about the opening of the Sally Ride exhibit for a Smithsonian Magazine article titled How the Smithsonian Is Honoring Remarkable American Women. In his words, the presence of women in the space force not only benefited Dr. Ride and her crew but also served as a visible symbol to everyone, particularly girls and young women, that there were people who looked like them enjoying fulfilling careers in space.

True appreciation of the diversity of people requires that we look beyond their physical characteristics to see their real uniqueness. One’s culture, family customs, language, and upbringing imbue individuals with mannerisms, mental models, and motivations, few of which have any physical manifestation. So, if we want to enrich our work groups with colleagues with differences in the cadence of speech or adherence to traditions, we will have to find a way to make those aspects visible, and in turn, engaging for all.

Jeff Reznick and Ken Koyle, respectively the Chief and Deputy Chief of NLM’s History of Medicine Division, published a free visual history of NLM and its beautiful buildings. In a brief video featuring some of the pictures from their book, you can take a tour of NLM’s nearly 200-year history. What’s important to pay attention to as you view these amazing images is the early and persistent commitment to creating a diverse workforce evidenced though the pictures of people present throughout the modern history of NLM.

As NLM prepares its plan to join with the rest of the NIH to dismantle structural racism and make the NIH a welcoming workplace for people of all racial identities and ethnic heritages, looking back helps us understand that what we could see in our history allowed us to be in our future — may we continue to grow as a welcoming workplace serving scientists and society.

Funding Announcement: NLM Encourages Diversity by Expanding Educational Opportunities

Guest post by Meryl Sufian, PhD, Chief Program Officer, NIH National Library of Medicine (NLM) Division of Extramural Programs.

Biomedical informatics and data science are exciting fields with careers that are in great demand and will continue to grow. As these areas of research have expanded, it is clear that individuals from racial and ethnic minorities and women are underrepresented. A diverse and inclusive workforce provides many benefits to advance science and discovery, such as robust learning environments, public trust in research, and incentives for encouraging underserved populations to participate in and benefit from health research.

The NIH Research Education Program (R25) supports research educational activities that complement other formal training programs in the mission areas of the NIH Institutes and Centers. NLM recently announced RFA-LM-22-001 (Short-Term Research Education Experiences to Attract Talented Students to Biomedical Informatics/Data Science Careers and Enhance Diversity [R25 Clinical Trial Not Allowed]). This funding opportunity seeks proposals from institutions interested in creating educational programs and research experiences that will recruit talented students from diverse backgrounds to pursue degrees in biomedical informatics and data science.

Please join us on April 13 at 11 am ET for a technical assistance webinar. Applications are due by May 31, and full details about the R25 funding opportunity are available at RFA-LM-22-001.

Encouraging diversity remains an ongoing challenge that must be examined at every level of the educational pipeline. NLM’s new R25 program addresses this issue, in particular the transition from undergraduate to graduate education where science and engineering students from underrepresented groups tend to leave the research enterprise. At the postsecondary level, students need exposure to opportunities and role models in fields that require computational ability. The R25 program will provide students with experience in cutting edge biomedical informatics and data science research, offer enriching mentorship experiences, and prepare students to enter doctoral programs in these fields.

Increasing diversity in the biomedical and data science workforce is complex and requires expanding opportunities in primary and secondary education, awareness, and access to mentorships. NLM is optimistic that the R25 initiative is a good first step to address the diversity and pipeline issues, and more importantly, that you will join us in this endeavor. NLM welcomes applications from institutions and organizations who will provide a supportive environment and are committed to increasing the diversity of the biomedical informatics and data science workforce.

Dr. Sufian joined the NLM in 2021 and most recently served as a Senior Science Advisor to the Director at the NIH Office of AIDS Research. Prior to this position, Dr. Sufian held various programmatic positions across NIH including as a Senior Program Director for the National Institute on Minority Health and Health Disparities and Program Director at the National Center for Advancing Translational Sciences. Her first position at NIH was as a Program Director for the National Cancer Institute where she managed and provided oversight for the evaluation of research initiatives

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