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

25×5: Decreasing Documentation Burden on U.S. Clinicians

Guest post by Sarah Rossetti, RN, PhD, FAAN, FACMI, FAMIA, and S. Trent Rosenbloom, MD, MPH, FACMI, FAMIA, Co-Chairs of the 25 By 5 Symposium

Health professionals are consistently being recognized for their heroic efforts to manage illness during the COVID-19 pandemic in the face of unprecedented challenges. As doctors, nurses, and all health care professionals faced their greatest challenges in more than a century, they did so while also dealing with the ongoing and increasing challenge of clinical documentation burden, which can be exacerbated by the widespread use of electronic health records systems.

The burden of clinical documentation on professionals has had a negative impact on health care since long before the first diagnosis of COVID-19. This burden can lead to a variety of negative outcomes including clinician burnout and decreased job satisfaction, medical errors, and hospital-acquired conditions. The pandemic increased recognition of the role of clinical documentation on workload. This recognition provided an opportunity to consider the contributions of inpatient and outpatient documentation on clinician well-being.

To establish strategies and approaches to reduce documentation burden on U.S. clinicians, we developed the 25 By 5 Symposium Series with the goal to reduce documentation burden to 25% of its current level by 2025. This symposium was sponsored by the American Medical Informatics Association, NLM, Columbia University Department of Medical Bioethics, and Vanderbilt Medical University Center.

The symposium, held virtually over six weeks in early 2021, addressed efforts to reduce clinical documentation burden, the associated challenges, and future innovations. More than 300 people representing clinical settings, academia, industry – electronic health record (EHR) vendors and start-up companies, government, payers, professional organizations, and patients participated in sessions featuring more than 30 presentations from stakeholders across health systems, academia, industry, government, payers, and professional societies.

Convening such a diverse group of key stakeholders and thought leaders resulted in the development of a national action plan focused on short, medium, and long-term approaches to reduce documentation burden to 25% by the year 2025.

To aid the work in addressing the complex issue of documentation burden, an organizing framework from the American Nursing Informatics Association 2020 Position Paper was used to outline the Six Domains of Burden.

These domains were used to organize breakout sessions and generate action items for reducing burden. An Executive Summary and Appendix of 82 Action Items from the Symposium are posted on the 25 By 5: Symposium website.

These action items are further categorized across four themes: 1) Accountability, 2) Evidence, 3) Education and Training, and 4) Innovation of Technology.

Action items—synthesized and prioritized in Calls to Action for key stakeholder groups — are highlighted below:

Call to Action for Providers and Health Systems

  • Establish guiding principles for adding documentation to EHRs and generating evidence for reduced documentation.
  • Develop a national roadshow and educate clinicians and clinicians in training on balancing brevity and completeness in documentation.
  • Increase support for functions like real-time information retrieval, documentation, and ordering in the EHR.
  • Implement interdisciplinary notes to decrease redundant documentation.

Call to Action for Health IT Vendors

  • Promote an ecosystem of interoperable systems to allow for complementary technology.
  • Develop measurement tools to categorize documentation practices.
  • Package best training practices into toolkits to promote best practice EHR use and plan recognition programs to publicize exemplars.
  • Create simplistic EHR views to see that new clinical data has been reviewed, then bookmark for the user and document as reviewed by that user in the EHR.
  • Implement user-personalized Clinical Decision Support to drive specific workflows.

Call to Action for Policy and Advocacy Groups

  • Urge agencies to fund innovative research that captures all billing code information without taking up clinicians’ time.
  • Select the best of breed approaches to documentation and implement throughout the health care system.
  • Develop technology to reliably and accurately create reimbursement/payment data for all care settings.

Now the hard work begins to turn these action items into change to benefit clinicians’ well-being and patient care.

This work will require the creation of a network of allies, convening sessions, and the creation of working groups from national health professional organizations in order to execute a national strategy for implementing and institutionalizing these changes.

Our clinicians are depending on concerted and coordinated engagement with key stakeholders from organizations within our health care community to mobilize strategies nationally.

On behalf of the 25 By 5 Symposium Steering Committee, we hope you will join us in this effort.

Funding sources: 
National Library of Medicine (1R13LM013581-01)
National Institute of Nursing Research (NINR): 1R01NR016941-01

Dr. Rossetti is an Assistant Professor of Biomedical Informatics and Nursing at Columbia University. Her research is focused on identifying and intervening on patient risk for harm by applying computational tools to mine and extract value from EHR data and leveraging user-centered design for patient-centered technologies.

Dr. Rosenbloom is the Vice Chair for Faculty Affairs and a Professor of Biomedical Informatics at Vanderbilt University. His research has focused on studying how health care providers, patients, and caregivers interact with health information technologies when documenting medical and health-related activities, and when making clinical decisions.

What Did You Do with Your Summer Vacation?

Well, if you are spending the summer at the NIH, you’ve likely been engaged in one of our many activities designed to access critical data and advance our understanding of the human experience by linking data sets together. Today, we are inviting you to engage in some additional best practices in accessing controlled data in ways that support science and preserve privacy.

In 2020, the NIH Scientific Data Council charged its Working Group for Streamlining Access to Controlled Data to spend a year engaging in dialogue within the NIH and with our extramural colleagues to better understand the experiences of scientists and the strategies that both facilitate and impede access to data. The group also considered where in the research process NIH should inform, engage, and gain consent of participants sufficiently to support science driven by access to controlled datasets.

NIH stores and facilitates access to many datasets, both open and controlled, with the goal of accelerating new discoveries and thereby maximizing taxpayer return on investment in the collection of these datasets. Data derived from humans that are shared through controlled-access mechanisms reflect NIH’s commitment to protect sensitive data and honor the informed consent provided by research participants in NIH-supported studies.

NIH has supported multiple controlled-access data repositories that uphold appropriate data protections for both human data and other sensitive data, while meeting the needs of various researcher communities. However, as data access requests increase, new repositories are established, and new mechanisms of providing access to data are developed, it is apparent that opportunities remain to improve efficiency and harmonization among repositories to make NIH-supported controlled-access data more FAIR: Findable, Accessible, Interoperable, and Reusable and to ensure appropriate oversight when data from different resources are combined. While these trends are enabling datasets and datatypes to be combined in new ways that advance the science, datasets, and datatypes that may or may not be controlled may, when combined, create inadvertent re-identification risks.

To help the agency address these issues in a way that is responsive to community needs, we are hosting a series of webinars through the end of July. We call these “breakout sessions” because they follow an outstanding webinar presented on July 9 available here. Richard Hodes, MD, director of the National Institute on Aging, launched the 3-hour seminar with a talk titled Opportunities for Advancing Research Through Better Access to Controlled Data. Ana Navas-Acien, MD, PhD, brought the perspective of indigenous and communities of people traditionally underrepresented in research, and she emphasized themes of community engagement and broadening the consent framework to consider community-level accountabilities as well as individual assent. Lucila Ohno-Machado, MD, MBA, PhD, addressed privacy preserving distributed analytics as a strategy to promote science while preserving privacy of data. Hoon Cho, PhD, described privacy-enhancing computational approaches to privacy preservation.

You can find the schedule for the breakout sessions below. These sessions are specifically designed to listen to the expectations, hopes, and concerns from researchers and participants. These webinars are free and open to the public; registration is required.

Breakout Session on “Making Controlled-Access Data Readily Findable and Accessible” on July 22 from 3 pm to 5:30 pm EST

Breakout Session on “General Opportunities for Streamlining Access to Controlled Data” on July 26 from 12:30 pm to 2 pm EST

Breakout Session on “Addressing Oversight, Governance, and Privacy Issues in Linking Controlled Access Data from Different Resources” on July 28 from 3 pm to 5:30 pm EST

To generate interest and hear from the broadest possible group of stakeholders, NIH has released a Request for Information on Streamlining Access to Controlled Data from NIH Data Repositories. Please note the closing date is August 9. We look forward to hearing from you! Please visit Streamlining Access to Controlled Data at the NIH for all of the information described in this post.

Finally, we would like to personally thank the many NIH staff members who serve on the working group:

  • Shu Hui Chen
  • Alicia Chou
  • Valentina Di Francesco
  • Greg Farber
  • Jamie Guidry Auvil
  • Nicole Garbarini
  • Lyric Jorgenson
  • Punam Mathur
  • Vivian Ota Wang
  • Jonathan Pollock
  • Rebecca Rodriguez
  • Alex Rosenthal
  • Steve Sherry
  • Julia Slutsman
  • Erin Walker
  • Alison Yao

I hope your summer vacation was as productive as ours!

(left to right)
Patricia Flatley Brennan, RN, PhD, NLM Director
Susan Gregurick, PhD, Associate Director for Data Science at NIH
Hilary S. Leeds, JD, Senior Health Science Policy Analyst for the Office of Science Policy at NIH

(Re)Engineering the National Library of Medicine Building

Guest post by Dianne Babski, Associate Director for Library Operations and Patrick Casey, NLM Building Engineer

NLM, the largest biomedical library in the world, is housed in Buildings 38 and 38A on the NIH campus in Bethesda, Maryland. As we head into our third century of existence, we are guided by our ten year NLM Strategic Plan, which outlines a vision for NLM as a platform for biomedical discovery and data-powered health, integrating streams of complex and interconnected research outputs that can be readily translated into scientific insights, clinical care, public health practices, and personal wellness.

An important step in realizing this future is to create a physical environment to better position NLM to fulfill the goals of its strategic plan. In Fall 2017, we engaged with NIH facilities management, architects, and historic preservation specialists to explore ways to better utilize our space, support research, and provide a progressive and collaborative work environment. Through an iterative and cooperative process, including engagement with and feedback from our many stakeholders, the needs expressed became the drivers for the recommendations and plans made for the proposed future of NLM.

Little did we know when we embarked on this extensive renovation that the project would take a twist – a global pandemic. In some ways, the pandemic provided an opportunity to recognize the extent of work that could still continue with many staff working remotely.

As we enter the first phase of the renovation project, that involves the Mezzanine level and 1st floor in Building 38, I thought it would be helpful to learn more about the project from the perspective of the person overseeing it – Patrick Casey, NLM’s building engineer. I had an opportunity to sit down with Patrick to ask some questions and get his thoughts on the project.


What have you found most interesting about the NLM renovation compared to other projects you’ve worked on?

Figure 1: The exterior view of the National Library of Medicine and Lister Hill Center.

NLM has a lot more people and building space than I would have assumed. The main building space (Building 38) is unique given its historical context and details. It was built in a very different era, and this renovation project is attempting to reutilize the space in a more modern way.

The main building was built in the 1950s in a construction fashion that is not done anymore, and it’s a building constructed using a lot of concrete. I’ve heard many stories about the construction of the building, one of which is that it was built as a bomb shelter to enable it to withstand a bomb attack to protect the collections.

What makes the NLM building renovation necessary and distinctive?

Figure 2: NLM’s Main Reading Room (before renovations).

This renovation is necessary to make better use of existing space, create new space for growing research programs, ensure the integrity of NLM’s collections, and support the future work of NLM. The breadth of the project is a treat to work on because there is never a shortage of things to do.

All of the various projects at NLM have unique characteristics. NLM facilities house the historical collections, a 24-hour data center, and a 10-story administrative facility supported by several stories below ground.

While the main building was built in the 1950s, Building 38A was added in the 1970s. While newer than the original Library building, Building 38A is also showing its age and “time stamp” from that era of building design.

What have you had to learn as part of this project?

Figure 3: NLM’s Main Reading Room (during renovations).

This is NLM’s first major renovation in 50 years, and we’ve had to learn a lot about some of the interesting challenges that exist with the building, including unique climate control concerns that need to be considered and addressed—especially on levels where historical collections are stored.

The project management process is constantly keeping us on our toes because there are a lot of things to plan. We do not typically have much down time.

What are you most excited to see at the end of the renovation?

I look forward to seeing how the new renovation does the building justice in terms of maintaining its unique qualities while providing staff with a modernized, 21st century work environment to facilitate collaboration, and creating a welcoming environment for visitors and patrons. I am excited to see the spaces open and ready for people to use and move into. That said, work will continue after this major renovation project is complete. Building system upgrades needed to improve environmental conditions will continue to be addressed. Tackling these improvements will introduce its own set of challenges, and I look forward to it.


We are very lucky to have an engineer on staff to help NLM oversee these major renovations, keep us informed of what’s going on, and help us continue to modernize and improve our work areas as we build for the vision of our future!

We would love to hear your tips or lessons learned if you went through renovations!

Ms. Babski is responsible for overall management of one of NLM’s largest divisions with more than 450 staff who provide health information services to a global audience of health care professionals, researchers, administrators, students, historians, patients, and the public

Mr. Casey is the NLM Building Engineer. He has worked for the federal government for nearly 19 years. Prior to working at NLM, he worked in various capacities at the Navy and Marine Corps working in facilities renovation and construction programs

Friends of the National Library of Medicine: A Convening, Educating, and Empowering Force Supporting the Mission of NLM

Guest post by Glen P. Campbell, Chair of the Board of Directors, Friends of the National Library of Medicine

Since our founding in 1986 as a nonprofit 501(c)(3) organization, the Friends of the National Library of Medicine (FNLM), have been honored to promote and support the National Library of Medicine (NLM). Our members, a coalition of individuals representing medical associations and societies, hospitals, health science libraries, corporations, and foundations, are dedicated to helping us accomplish our mission.

FNLM Mission and Goals

To promote and enhance the mission of the NLM, the FNLM convenes and celebrates thought leadership in data science, informatics, and health care communications to:

  • Advance trusted resources for data-driven research and health information
  • Promote meaningful engagement across health communities and biomedical communications enterprises
  • Build the workforce of tomorrow

In partnership with NLM, we work to achieve mutual goals that accelerate discovery, advance health in the U.S. and globally, and empower individuals with trusted health information.

Increasing public awareness and use of NLM, and supporting its many programs in research, education, and public service is our top priority. Members of the FNLM Board represent constituencies across the country and, more recently, globally. They serve without compensation—giving freely of their time and expertise.

Taking a Fresh Look

With the fifth anniversary of the appointment of Patricia Flatley Brennan, RN, PhD, as director of NLM, our Board thought it a good idea to take a fresh look at our strategic plan to ensure that we remain fully aligned with the 2017-2027 NLM Strategic Plan implemented under Dr. Brennan’s dynamic leadership. Dr. Brennan, along with the NLM Leadership team, are meeting the extraordinary challenges of the 21st century with an ambitious plan to accelerate discovery through data-driven research, expand and reach NLM constituents in new ways, and ensure that NLM’s workforce is equipped with the tools and skills required to thrive in a data-powered world.

The FNLM Strategic Task Force, under the direction of Douglas Fridsma, MD, PhD, and John Glaser, PhD, consulted with our FNLM Board, many of whom are Library users, and colleagues at NLM, and the FNLM Board approved a set of initiatives that will continue to support NLM’s Strategic Plan through two categories of initiatives: programs and events and stakeholder forums. A reorganization of our committee structure will support their successful implementation.

Expanding Education

During the COVID-19 pandemic, the FNLM’s Conference Committee, chaired by Andrew Balas, MD, PhD, Vice President, FNLM, took our conference program virtual with a series of workshops aligned with the NLM Strategic Plan. Workshops included Changing Publication Practices in the COVID-19 Era, Real World Data and Electronic Health Records in Clinical Research, and Artificial Intelligence to Accelerate Discovery. The FNLM Board approved an expansion of these workshops under a revised Education Committee to enhance the workshops with an even sharper focus on the Library’s leadership in data-powered health.  

The FNLM regularly convenes a group of publisher representatives responsible for publishing biomedical content. This Publisher’s Forum represents organizations that use a variety of publishing models including open access, subscription access, for profit and non-profit and are international, regional, or U.S. based. The group meets with the NLM leadership team and colleagues to discuss issues and concerns of common interest. The goal is to increase the understanding of how to work together as effectively as possible to bring quality health and scientific information to scientists, researchers, clinicians, and patients.

Our Board also approved new forums for medical librarians, biotechnology organizations, and NLM Fellows. The increasing interactions between NLM and among these constituencies call for even closer engagement, and the FNLM is uniquely positioned to facilitate this. 

I have only touched briefly on the significant work done by the FNLM Strategic Task Force and Board to ensure that our plan is well aligned with that of NLM. Personally, supporting the transformation of the NLM from a passive to active player in the global health care enterprise is thrilling. Our work continues, but we will be hard pressed to keep pace with Dr. Brennan and her leadership team, whose fast pace is transforming the Library day by day.

What’s Next

One final note: the FNLM’s annual Awards Gala, which celebrates and honors individuals whose contributions advanced public health, medicine, and health communications, was postponed in 2020 because of the COVID-19 pandemic. I hope you will join our next event when we bring together those involved in biomedical research and health care to recognize their support for the extraordinary work of the NLM.

Interested in learning more about our work to enhance the Library’s profile? We encourage you to visit us at FNLM.org.

Glen P. Campbell is the Chair of the Friends of the National Library of Medicine Board of Directors. He has served in this capacity for more than 10 years.