Investing in a Sustained Partnership: A Data-Driven Human Approach to Social Justice and Equity

Guest post by Patricia Matthews-Juarez, PhD, Chair of the Environmental Health Information Partnership (EnHIP) and Rueben C. Warren, DDS, MPH, DrPH, MDIV, Scientific Advisor for EnHIP

In 1989, after many successful years of developing scientific and technical databases, the National Library of Medicine (NLM) started its first long-term outreach plan to train health professionals how to use NLM’s suite of digital tools. While these efforts helped large medical schools and hospital centers, institutions comprised of substantial minority populations struggled to maintain access to online databases and keep up with rapidly evolving technologies.

As a result, NLM sponsored a one-year pilot project to increase the capacity of historically black colleges and universities (HBCUs), Hispanic-serving institutions, minority-serving institutions, and tribal colleges to access NLM’s toxicological and chemical databases. This program was designed not only to benefit the institutions, but also to investigate environmental toxins commonly found in minority and socio-economically disadvantaged communities, particularly in the southern United States. In 1991, the pilot project grew into a partnership called the Environmental Health Information Partnership (EnHIP).

EnHIP unites heads of the various universities and colleges with NLM leadership and staff. In addition to examining environmental hazards, this program also calculates the impact of hazardous waste on the lives of African Americans using data, technology, and scientific resources.

This single investment made more than 30 years ago to strengthen the capacity of HBCUs resulted in a tremendous payback in terms of education and research. As NLM and EnHIP have evolved, so have the demands for access to complex technology that capture and interpret data as a pathway to scientific explorations, interventions, research endeavors, and discoveries. The return on investment is the systemic organizational change at the member schools of EnHIP and listening channels at NLM. These opportunities create community-based projects in local communities and enhance the capacity of EnHIP member institutions to reduce health disparities in ways never imagined. These opportunities, driven by consistent investments from NLM, are linked to the practice and process of social justice and fairness, trustworthiness, and truth telling.

NLM continues to bring high standards and innovative ideas to the acquisition and management of biomedical data as scientists unravel the impact of the social determinants of health, health disparities, and health equity. The NIH UNITE initiative to end structural racism offers new opportunities to invest in equitable research and determine how data is collected, managed, and accessed with justice and equality in mind. Three decades of collaboration in data science, open access publications, and community/citizen science are paying off. Shared values and networks have been amplified at the international, national, regional, state, and local levels, and across populations. Years of consistently shared and common agendas have led to a strong and effective partnership with the current participating 23 HBCUs, Hispanic-serving institutions, minority-serving institutions, and tribal colleges. These dividends of trust, open communication, and transparency are reflected in the success of our nation in its efforts to reach for equity in science, education, and service.

Dr. Matthews-Juarez is the Senior Vice President for Strategic Initiatives and Innovation and Professor in the Department of Family and Community Medicine at Meharry Medical College. Her work focuses on the social determinants of health, health disparities, and equity in primary care education and community engagement in both the United States and Africa.

Dr. Warren is Director of the National Center for Bioethics in Research and Health Care and Professor at Tuskegee University. He previously served as Associate Director for Minority Health and Associate Director for Environment Justice at the Centers for Disease Control and Prevention and Director of Infrastructure Development at the NIH National Institute on Minority Health and Health Disparities

Dismantling Structural Racism

NLM stands with NIH Director Francis Collins in establishing new ways to support diversity, equity, and inclusion, and identifying and dismantling any policies and practices that may harm our workforce and our science. This work is just getting started and I encourage you to respond to a Request for Information that NIH issued seeking input on the approaches NIH can take to advance this goal. Comments can be submitted through the submission website and must be received by April 9, 2021.

The NIH has long supported programs to improve the diversity of the scientific workforce. Yet those efforts have not been sufficient to achieve racial equity across the biomedical research enterprise. This month, NIH launched an effort to end structural racism in biomedical research through a new initiative called UNITE. UNITE is an acronym that reflects the multidimensional approach that NIH is taking to address this complex problem.


  • Understanding stakeholder experiences through listening and learning
  • New research on health disparities, minority health, and health equity
  • Improving the NIH culture and structure for equity, inclusion and excellence
  • Transparency, communication, and accountability with our internal and external stakeholders
  • Extramural research ecosystem: changing policy, culture and structure to promote workforce diversity

NLM is committed to improve diversity, equity, and inclusion with regard to structural racism and all aspects that make us who we are and take into account from where we came. We are grounded in the belief that advancing diversity, equity, and inclusion improves the quality of science and engenders more robust knowledge representations and more culturally-competent means of supporting investigations and delivering health information.

Through our intramural research and extramural programs, we are supporting research to identify and mitigate bias in data sets and analytic tools, and enhancing the diversity of young scholars preparing to enter the fields of biomedical informatics, computational health, and data science.

In addition to actively participating in NIH-wide diversity, equity, and inclusion efforts, we are turning to the NLM staff to garner ideas about how NLM should specifically create an environment that promotes diversity and inclusion within our Institute. Last week, more than 150 people attended a special conversation between NLM staff and leadership where we learned many things and shared ideas ranging from improving recruitment to understanding implicit bias.

The NLM leadership has taken up the challenge and will work with our creative staff to set a path forward to promote inclusive excellence, and create a workplace that is diverse, inclusive, equitable, and respectful of the talents of everyone.

NLM is committed to supporting NIH in identifying and dismantling any policies and practices that may harm our workforce, our science, and society at large. This is just the beginning of our journey to improve the NIH and everyone’s health by ending structural racism in biomedical research. 

I invite you to join us in this journey too.

Fostering a Culture of Scientific Data Stewardship

Guest post by Jerry Sheehan, Deputy Director, National Library of Medicine.

Making research data broadly findable, accessible, interoperable, and reusable is essential to advancing science and accelerating its translation into knowledge and innovation. The global response to COVID-19 highlights the importance and benefits of sharing research data more openly.

The National Institutes of Health (NIH) has long championed policies that make the results of research available to the public. Last week, NIH released the NIH Policy for Data Management and Sharing (DMS Policy) to promote the management and sharing of scientific data generated from NIH-funded or conducted research. This policy replaces the 2003 NIH Data Sharing Policy.

The DMS policy was informed by public feedback and requires NIH-funded researchers to plan for the management and sharing of scientific data. It also makes clear that data sharing is a fundamental part of the research process.

Data sharing benefits the scientific community and the public.

For the scientific community, data sharing enables researchers to validate scientific results, increasing transparency and accountability. Data sharing also strengthens collaborations that allow for richer analyses. Strong data-sharing practices facilitate the reuse of hard-to-generate data, such as those acquired during complex experiments or once-in-a-lifetime events like natural disasters or pandemics.

For the public, sound data-sharing practices demonstrate good stewardship of taxpayer funds. Clear, well-written data sharing and management plans promote transparency and accountability to society. They also expand opportunities for data to be access and reused by clinicians, students, educators, and innovators in health care and other sectors of the economy.

As an organization dedicated to improving access to data and information to advance biomedical sciences and public health, NLM plays a key role in implementing the new policy and supporting researchers in meeting its requirements. NLM maintains a number of data repositories, such as the Sequence Read Archive and, that curate, preserve, and provide access to research data. NLM also maintains a longer list of NIH-supported data repositories that accept different types of data (e.g., genomic, imaging) from different research domains (e.g., cancer, neuroscience, behavioral sciences). Where appropriate domain-specific repositories do not exist, NLM has made clear how researchers can include small datasets (<2GB) with articles deposited in NLM’s PubMed Central (PMC) under the NIH Public Access Policy.

NLM also works with the broader library community to support improved data management and sharing. Supplemental information issued with the new policy makes it clear that research budgets can include costs of data management and sharing, such as those for data curation, formatting data to accepted standards, attaching metadata to foster discoverability, and preparing data for storage in a repository. These are the kinds of services increasingly provided by libraries and librarians in universities and academic medical centers across the country. NLM, through the Network of the National Library of Medicine, offers training in data management and data literacy to health science, public, and other librarians to expand capacity for these important services.

NIH’s DMS Policy applies to all research, funded or conducted in whole or in part by NIH, that results in the generation of scientific data. This includes research funded or conducted by extramural grants, contracts, intramural research projects, or other funding agreements. The DMS Policy does not apply to research and other activities that do not generate scientific data, including training, infrastructure development, and non-research activities.

NIH will continue to engage the research community to support the change and implementation of this new policy, which will go into effect in January 2023. NLM will continue to work within NIH and across the library and information science communities to develop innovative ways to support the policy and advance the effective stewardship of research data. Let us know how else we can support this important policy advance.

Read more about this major policy release in the NIH’s Under the Poliscope blog.

As NLM Deputy Director, Jerry Sheehan shares responsibility with the Director for overall program development, program evaluation, policy formulation, direction and coordination of all Library activities. He has made major contributions to the development and implementation of NIH, HHS, and U.S. government-wide policy related to open science, public access to government-funded information, clinical trials registration, and electronic health records.

Bridging the Gap: From Research to Policy

Guest post by Ellen T. Kurtzman, PhD, MPH, RN, FAAN, associate professor, School of Nursing, The George Washington University

As a health services researcher, I have always been interested in how to bridge the divide between research and policy. I constantly ask myself, “Which of my research questions will inform today’s most pressing policy debates?” and “How can I teach the next generation of nurse scientists to conduct policy-relevant research?” I recently left my academic position and spent a year working on Capitol Hill as one of eight 2018 –2019 Robert Wood Johnson Foundation Health Policy Fellows. In this blog, I offer a few key lessons from my time as a fellow that influenced my scholarship.

Lessons from my fellowship year

  • Right place, right time. The policymaking environment is fast paced. New issues emerge quickly, moving others lower on the priority list. The deck is constantly being reshuffled. Perhaps there is no better example of this than COVID-19. Who knew a year ago that a pandemic would draw decision makers’ attention away from other pressing policy issues? When a policy issue like this emerges unexpectedly, the need for evidence is virtually instantaneous. But the research process is methodical and cannot easily be accelerated. Randomized studies and clinical trials take time. Which implies that the scientific process and policymaking timelines do not naturally mesh. Recognizing that available evidence needs to be ready at precisely the moment that a policy issue is being contemplated suggests that the relationship between science and policymaking should be reframed.  
  • Positioning researchers to contribute. Because there are so many policy issues being contemplated simultaneously, deep subject matter expertise from authoritative and independent sources is highly valued. Scientists and academics are ideally situated to be honest brokers, yet it is not always easy for policy staff to find expertise on short notice. Researchers need to better position themselves and their science during a noncrisis period so that they are ‘top-of-mind’ when urgent needs emerge.
  • All about trade-offs. Harold Lasswell, an influential political scientist and theorist, helped define “politics” by asking, “Who gets what, when, and how?” Public policy is the art of allocating scarce resources to competing parties. I have always been interested in research questions about health care quality and value, but many of the secondary data sources I rely on lack the variables that would enable me to examine price or cost outcomes. In the short time I spent on Capitol Hill, it became abundantly clear to me why research that examines quality in the absence of cost considerations is insufficient.

Possible solutions

  • Policy in all things. Nursing, medical, and health sciences programs typically include a single health policy course and/or rotation. Rather than relegating policy to just one course, why not see “policy in all things”? During OB-GYN grand rounds, why not discuss policy solutions that address maternal mortality? What keeps us from asking our psychiatric nursing students to debate mental health parity issues or veteran suicide rates? If we incorporate policy into every course, our students will leave their programs better prepared to bridge the divide between science and policy.
  • New definitions of scholarship. Historically, academia has viewed scholarship in narrow terms. For example, criteria for appointments, promotion, and tenure (APT) reward refereed journal articles and colloquia, yet these materials are not generally accessible or readily available outside of academic circles. To bridge the divide between science and policy, academics might consider adopting a broader definition of scholarship and creating incentives for deliverables that appeal to decision makers. Could we, for example, adjust APT criteria so that the process rewards policy papers, issue briefs, and congressional testimony equally? By encouraging scholarship that reaches decision makers, we would be optimizing the policy impact of our science.
  • Enhanced dissemination and outreach. Policymakers need the deep expertise that scientists and academics possess, but we are often siloed from one another. With rare exceptions, we tend not to attend the same meetings or conferences, read the same journals or books, or consume the same news or other media. I now realize that, for my work to inform policy, I need to reconsider how I package and disseminate my findings as well as how I position myself as a subject matter expert. By understanding and following key policy issues, learning how to communicate with policymakers, and investing time and energy in building relationships during times of calm, I will be facilitating swifter adoption of my science and more meaningful dialogue with policy staff when there is a critical need for information.

Dr. Kurtzman is a health services researcher and a tenured associate professor of nursing with secondary appointments in the university’s Milken Institute School of Public Health and Trachtenberg School of Public Policy & Public Administration. Her investigator-initiated research explores the impact of federal, state, and institutional policies on health care quality and the role of the health care workforce in achieving higher value care. She is currently exploring the impact of states’ cannabis policies on health outcomes including the consequences for pregnant women and their infants. 

Share Your Thoughts on NIH’s Research Priorities

Guest post by Leigh Samsel, MS, NLM Planning and Evaluation Officer and NLM representative to the NIH-Wide Strategic Plan Working Group.

The National Institutes of Health (NIH) is developing its next NIH-Wide Strategic Plan, and we’re asking for your input. This plan will help NIH capitalize on new opportunities for scientific exploration.

Building on the previous NIH-Wide Strategic Plan, the new plan will guide NIH’s research efforts for Fiscal Years 2021–2025. The framework articulates NIH’s priorities in the following key areas:

  • Biomedical and behavioral science research
  • Scientific research capacity
  • Scientific integrity, public accountability, and social responsibility in the conduct of science

In addition, the framework identifies several cross-cutting themes that span the scope of these priorities.

The goal of this NIH-Wide Strategic Plan is to highlight major themes that encompass all of NIH. It is not intended to outline the numerous important research opportunities for specific disease applications, which are covered in the existing strategic plans developed by the 27 Institutes, Centers, and Offices that make up NIH.

I hope you’ll review the strategic plan framework described in the Request for Information (RFI) and provide feedback using the RFI submission site.

Responses to the RFI will be accepted through March 25**.  NIH is encouraging stakeholder organizations (e.g., patient advocacy groups, professional societies, etc.) to submit a single response reflective of the views of the organization/membership as a whole.

** Update: The deadline has been extended until 11:59 pm, April 1, 2020.

Want to Learn More?

NIH is hosting two webinars in March to describe the planning process and answer questions. Those dates are:

  • Monday, March 9 – 1:30 pm – 2:30 pm EST
  • Monday, March 16 – 10:00 am – 11:00 am EST

Additional details about the webinars can be found on the NIH-Wide Strategic Plan webpage.

Your input is vital to ensuring that the NIH-Wide Strategic Plan for Fiscal Years 2021–2025 puts biomedical research on a promising and visionary path. I appreciate your time and consideration in assisting NIH with this effort.  

Leigh Samsel, MS, is responsible for formal reporting of NLM activities and for providing staff leadership to strategic planning activities.

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