Five Years and Counting!

On August 13, 2016, I became the first woman, nurse, and industrial engineer to serve as director of the National Library of Medicine (NLM). From its beginning in 1836 as a small collection of books in the library of the U.S. Army Surgeon General’s office, NLM has become a global force in accelerating biomedical discovery and fostering evidence-based practices. I am proud to direct this esteemed organization and delighted to guide it towards its third century beginning in 2036. 

This has been an exciting five years for NLM.

We accelerated data-driven discoveries and advanced training in analytics and data science across NIH and around the world. Our genomic resources played a crucial role in supporting NIH and the scientific community’s ability to understand a novel virus and address the COVID-19 pandemic. NLM investigators developed innovative uses of deep learning and artificial intelligence and applied them to a wide range of problems – ranging from interpretation of clinical images to improving search and retrieval of highly relevant citations from NLM’s PubMed biomedical literature database.

NLM pioneered strategies to link data sets to articles through our PubMed Central (PMC) digital archive, and doubled the size of the NLM-supported Network of the National Library of Medicine—reaching almost every congressional district in the United States with the capacity to connect NLM resources to communities in need.

We provided technical expertise to develop a secure single sign-on to a wide range of controlled data resources, and redeployed our research infrastructure to help public health authorities detect foodborne outbreaks and track the emergence of coronavirus variants. We also advanced our use of automated-first indexing to make sure that the published literature is available to our stakeholders as quickly as possible.

With the support and collaboration of other components of NIH, we are building a 21st century digital library that uses our collections to offer literature, data, analytical models, and new approaches to scientific communications that are accessible, sustainable, and available 24 hours a day and 7 days a week.

NLM’s archival collections continue to grow and evolve as the archival records of individuals, organizations, and other communities in health and medicine are increasingly created and communicated electronically or digitally. We expanded the formats and types of records we collect—and make accessible and usable— to include born-digital formats such as websites, social media, and data sets. For example, NLM deployed innovative techniques to prospectively curate and add COVID-19-related information from traditional news, social media, and other sources to our Digital Collections. These collections preserve for future research the ephemeral online record of modern health crises, documenting the work and experiences of health care providers, researchers, government agencies, news agencies, patients, and caregivers.

As a nurse and an industrial engineer specializing in health systems engineering applied to patient self-management, I bring a perspective to NLM that expands its mandate from supporting biomedical researchers and clinical practitioners to one that aggressively supports the health of the nation.

During my tenure, NLM’s footprint has expanded by:

  • Growing our research enterprise in support of data-driven discovery;
  • Supporting key priorities of the NIH in data science, access to secure data repositories, and community engagement;
  • Strengthening the integrity and efficiency of our internal resources to accelerate the acquisition, preservation, and dissemination of biomedical data; and
  • Expanding our commitment to public outreach and engagement.

Two guiding principles have shaped my work:   

One NLM

I initiated the One NLM concept as an organizing framework during my first year as director of NLM. One NLM creates a rallying point, making explicit that all our offices and divisions work in concert and in support of NLM’s mission. As described in my January 2017 blog post entitled, One NLM:


One NLM emphasizes the integration of all our valuable divisions and services under a single mantle and acknowledges the interdependency and engagement across our programs. Certainly, each of our stellar divisions . . . have important, well-refined missions that will continue to serve science and society into the future. The moniker of One NLM weaves the work of each division into a common whole. Our strategic plan will set forth the direction for all of the National Library of Medicine, building on and augmenting the particular contributions of each division.

Strengthening the NLM Senior Leadership Team

I employ a team model of leadership—engaging the deputy director, four division directors, and four office directors in biweekly meetings. With the support of external consultants, we engaged in a one-year leadership development activity focused on building capacity for joint decision making, improving risk tolerance, and creating an environment that supports trans-NLM collaborative problem solving. I found that continued engagement with individual members and the leadership team established an organizational milieu that led to improved trust in each other. And the team, which held up in good stead during a period of maximum telework in response to COVID-19, ensured the innovative mobilization of NLM resources to help NIH rapidly assume new research programs, respond to public health needs, and most importantly serve as a trusted source of information.

What I’ve Learned

While I remain true to my core values and beliefs, I’m not the same Patti Brennan as I was when I entered the ‘Mezzanine’ floor of NLM’s Building 38 nearly five years ago. I’ve learned to mobilize and reward the talents of the 1,700 people working at NLM to achieve common goals. I figured out how to work with a boss, something few academics ever actually face. I’m better at finding the niche into NIH conversations and policy-setting meetings where the talents of NLM and our deep understanding of data science accelerate NIH’s mission to turn discovery into health. I’ve created space in conversations for the voices of others, particularly the members of my leadership team with whom, I’ve learned, complement my vision and drive with their knowledge and discernment. It’s been a great ride!

How does the you of 2021 compare to the you of 2016?  

Common Data Elements: Increasing FAIR Data Sharing

Guest post by Carolina Mendoza-Puccini, MD, CDE Program Officer, Division of Clinical Research, National Institute of Neurological Disorders and Stroke (NINDS) and Kenneth J. Wilkins, PhD, Mathematical Statistician, Biostatistics Program and Office of Clinical Research Support, Office of the Director, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK)

Previous posts published in Musings from the Mezzanine have explained the importance of health data standards and their role as the backbone of interoperability. Common Data Elements (CDEs) are a type of health data standard that is commonly used and reused in both clinical and research settings. CDEs capture complex phenomena, like depression, or recovery, through standardized, well defined questions (variables) that are paired with a set of allowable responses (values) that are used in a standardized way across studies or trials.

CDEs provide a way to standardize data collection—ensuring that data are collected consistently, and otherwise-avoidable variability is minimized.

Where possible, CDEs are linked to controlled vocabularies and terminologies commonly used in health care, such as SNOMED-CT and LOINC, and CDEs can provide a route to harmonize with non-prospective clinical research designs. Such links leverage common data entities, like clinical concepts underlying common data models, to align evidence of clinical studies with evidence from ‘real-world data’ such as electronic health records (EHRs), mobile/wearables, and patient-reported outcomes, what’s become known in recent years as ‘real world evidence’.

Importance of CDEs for Interoperability and Consistency of Evidence Across Settings

FAIR Data Principles (Source: National Institute of Environmental Health Sciences)

NIH’s response to the COVID-19 pandemic highlighted the importance of developing CDEs that can be used and endorsed across NIH-funded COVID-19 research so that resulting, urgently-needed data would be FAIR: Findable, Accessible, Interoperable, and Reusable.

Many groups across NIH identified, or are in the process of identifying, CDEs that are both COVID-19-related, and related to the needs of specific research projects such as NIH’s Disaster Research Response (DR2) program, Rapid Acceleration of Diagnostics—Underserved Populations (RADx-UP) and Researching COVID to Enhance Recovery (RECOVER) initiatives. There was also a need to develop a process for indicating NIH endorsement of CDEs that meet meaningful criteria, are made available through a common discovery platform (the NIH CDE Repository), and avoid duplicating functions of resources that already exist.

NIH’s Scientific Data Council charged a group of members of the NIH CDE Task Force, the CDE Governance Committee (Governance Committee), to develop this endorsement process based on the following criteria:

  • Clear definition of variable/measure with prompt and response 
  • Documented evidence of reliability and validity, where applicable
  • Human- and machine-readable formats
  • Recommended/designated by a recognized NIH body (Institute, Center, Office, Program/Project Committee, etc.)
  • Clear Licensing and Intellectual Property status (prefer Creative Commons or open source)

The role of the Governance Committee is to assure that the evidence of acceptability, reusability, and validity is properly presented and documented.

Submission of CDEs for Endorsement

The Governance Committee determined that CDEs will be submitted either as “Individual CDEs” or “Bundles.” Individual CDEs can be collected separately. Bundles are a group of questions or variables with specified sets of allowable responses that are grouped together and used as a set. Bundles may include standardized instruments, such as the Patient Health Questionnaire 9 (PHQ-9) Depression Scale, or a number of questions that must be collected as a group to maintain their meaning as individual elements (e.g., demographic features).

The Governance Committee will conduct a review of submissions based on the endorsement criteria approved. Once endorsed, Individual CDEs and possibly Bundles will be published in the NIH CDE Repository with an endorsement badge.

Reuse of NIH-endorsed CDEs Going Forward

With these governance-endorsed additions to the NIH CDE Repository, its role as a unified resource for common data entities and semantic concepts (the conceptual underpinnings of common data elements themselves) will lay the groundwork for researchers (NIH-funded or otherwise) to plan on interoperable data features. With the endorsement criteria and NLM-led efforts to enhance the NIH CDE Repository as an NIH-wide research resource, its role can grow along with those of related public and private sector alignment efforts. These include standards ranging from the United States Core Data for Interoperability for routine health care to the FDA submission standards within the Clinical Data Interchange Standards Consortium (CDISC) for treatments and preventive therapeutics, like vaccines, that we all rely upon for quality care.

Features to the NIH CDE Repository will continue to be enhanced—whether to search for semantically-related concepts or to highlight subtle distinctions among closely related CDEs. The NIH CDE Repository can also serve as a clearinghouse for interoperability in data from across a broad range of research, from prospectively-designed studies to those making use of data captured in the course of clinical care (such as EHRs) yet repurposed for real-world evidence.

In the wake of lessons learned from the most challenging aspects of early COVID-19 research, CDE use can increase FAIR data sharing across the research ecosystem in the near-seamless fashion just as envisioned by legislators when they enacted the 21st Century Cures Act. CDE governance processes are poised to adapt accordingly and to keep working toward greater data interoperability within this post-COVID-19 pandemic era.

CDE Governance Committee Members: Matt McAuliffe (Center for Information Technology), Kerry Goetz (National Eye Institute), Denise Warzel (National Cancer Institute), Erin Ramos (National Human Genome Research Institute), Jyoti Dayal (National Human Genome Research Institute), Deborah Duran (National Institute on Minority Health and Health Disparities), Janice Knable (National Cancer Institute). Chairs: Carolina Mendoza-Puccini (National Institute of Neurological Disorders and Stroke) and Kenneth Wilkins (National Institute of Diabetes and Digestive and Kidney Diseases). Ex Officio members: Robin Taylor, Mike Huerta, Lisa Federer (National Library of Medicine). Collaborator: Greg Farber (National Institute of Mental Health).

To learn more about the NIH Common Data Elements (CDE) Repository, watch this short video.

Dr. Mendoza-Puccini leads the NINDS Common Data Elements Project and is a Program Officer at the NINDS Division of Clinical Research.

Dr. Wilkins is a member of both the NIH-wide and NIDDK-specific Data Science and Data Management Working Groups and engages with researchers from across intramural and extramural programs on quantitative aspects of design and analysis.

To the Nurses Today… And The Nurses Yet To Be

In early May, I had the pleasure of giving the virtual commencement speech to the graduating class of the University of Illinois College of Nursing. It was an honor to speak to the next generation of nurses as they step into a world forever changed by the COVID-19 pandemic. In a normal year, it takes hard work to complete a nursing degree; during a pandemic, it takes extra dedication to pursue your studies online.

As a nurse myself, I’m proud of the accomplishments of these 400 new nurses and look forward to providing them with resources and information as they start the next phase of their career, and for many years to come.

Please join me in wishing a warm welcome to these new graduates as they enter a world that needs and appreciates the hard work of nurses more than ever.

Video Transcript (below):

I’m Patti Brennan, Director of the National Library of Medicine. I want to add my congratulations to the choruses of friends, families, and colleagues on your accomplishments being acknowledged this day of the graduation at the University of Illinois College of Nursing.

Almost 200 of you are entering the profession for the first time, and another 200 are receiving graduate degrees in recognition of your advanced education in nursing specializations.

I want to speak today to the nurses who you are right now, the nurses who you will become, and the nurses who you will need, and finally to the nurses,  yet unborn,  who will serve society in the future.

To the nurses who you are today:  

Your nursing education experience was like no other over the past 100 years!  You’ve learned how to learn via Zoom and TikTok, transform nursing interventions into telemedicine delivery, and develop novel skills engaging patients not only as informants but as partners in care. One of the few positive outcomes of this coronavirus pandemic is the societal recognition of the essential value and contributions of nursing. So, you are entering a world that both needs you greatly and is readily accepting of the contributions you could make. 

I hope you will take with you the joy of friendships you made during your educational time here at U of I College of Nursing: the excitement of learning, the meaningful contributions of patients who accompanied you on your learning journey, and the hope that suffused your faculty members as they guided you on your journey. I trust that the foundation of your education here will give you a firm basis, grounding you in trust, supporting your explorations.

You are entering a world that needs nursing more than ever before. I urge you to use the professional education you have had to support doing the urgent tasks in front of you while remaining true to nursing’s social contract. The hallmark of a professional is doing a task that looks like something someone else could do, but is done with the sophistication of specialized knowledge and skill that grows from the deep foundation, the future vision, and the broad perspective that we draw from our profession. It’s not enough to act, we must BE nurses.

To the nurses you will be in 2031:

What do you see when you look back across the decade since graduation? Have you achieved pay equity? Did you accomplish the next level of education that you envisioned as you completed your degree today? Did you find satisfaction and depth in the area of nursing you originally selected, or did you explore several areas before finding your niche? Or maybe, did you find a way to express the values and knowledge of nursing through another profession such as law or design? Wherever you are in ten years, I hope you look back in wonder, awe, gratitude, and satisfaction.

How does the world around you look in 2031? Has our treatment of Mother Earth improved so that the UN’s 17 Goals for Sustainable Development have actually been met? Have we achieved social equity and removed health disparities engendered by structural racism? Was the coronavirus pandemic the last pandemic of the decade or was it the start of a pandemic decade? Has someone made driverless cars practical or figured out how to get rid of all of those cords on our computers?

To the nurses you will need in 2071:

Right now, I’m just about the age that you will be in 2071. I am so confident of the importance of our profession to society and of our value to it that I am sure there will be nurses out there in the future ready to serve society.

These are the nurses who will be there to care for you—I will be long gone by then. So, I’m going express my hopes for the ways nurses approach patient care and knowledge discovery with some personal reflections. 

I hope that these nurses will remember that confidence is often accompanied by uncertainty, and that nurses must consider both as they diagnose and treat the human response to living.  

I hope they will remember that many of my age want nurses to know that we feel like we did 30 years ago, think we look like they did 20 years ago, have had meaningful and interesting career and life contributions, and bring the wisdom of aging and the freedom of age. All of this makes us even more desiring of good nursing care. Nurses should let us know how to find them, how to recognize them, and how to benefit from their expertise.

I’m less afraid of dying than I was earlier in my life in part because I feel like I could live forever, or at least another 30 years, in good health with the love and support of my friends and family.

I want the nurses who care for you when you are my age to respect that goal of mine and use it to shape their practices. Like the future you, know that even now I want your guidance to help me live as fully as I can.

I don’t want nurses to be afraid to bring up hard topics—social disruption, social isolation, loss, loneliness, hopes—because all of these shape how we approach my health. We can be better partners if nurses are as brave as we need them to be.

To the nurses of 2121 yet unborn:

These are the nurses who will be there to bring nursing into the future. What legacy will you leave them? How will you help shape the future nurse? What can you do to create in them the very excitement that you feel today?

Can you share your experiences, remove barriers, open pathways of influence, give them shoulders to stand on? Can you help those nurses yet unborn know that it is better to ask a question than to answer any single question?

Can you inspire them to discover and not just remember? And more importantly, can you help them build partnerships and pathways with people who bring the best of nursing to complement and extend the best that is in that person?

What can you do to prepare the world for nursing? To make the very best practice environment for nursing? What ways can you engage with architects, home builders, city planners to make the world not only a place that nurses LIVE in, but is livable because of nursing? Over 30 years ago, a great nurse thinker identified that it is a critical function of nursing to create an environment that supports development. What will you do to build that environment so that the nurses of 2121 can live as nurses, being nurses?

Congratulations and celebrations to all of you—faculty, students, administrators, family, and friends. Another journey is complete, and another is starting.

40 Years of Progress: It’s Time to End the HIV Epidemic

Guest post by Maureen M. Goodenow, PhD, Associate Director for AIDS Research and Director, Office of AIDS Research, National Institutes of Health

On June 5th, the National Institutes of Health (NIH) Office of AIDS Research (OAR) joined colleagues worldwide to commemorate the 40th anniversary of the landmark 1981 Centers for Disease Control and Prevention (CDC) Morbidity and Mortality Weekly Report (MMWR) that first recognized the syndrome of diseases later named AIDS. June 5th also marks HIV Long-Term Survivors Awareness Day. 

Forty years ago, the CDC’s MMWR described five people who were diagnosed with Pneumocystis carinii pneumonia—catalyzing a global effort that led to the identification of AIDS, and later, the virus that causes AIDS.

Over the years, much of the progress to guide the response to HIV has emerged from research funded by the NIH, and helped turn a once fatal disease into a now manageable chronic illness. This progress is attributable in large part to the nation’s longstanding HIV leadership and contributions at home and abroad.

NIH is taking action to recognize the milestones achieved through science, pay tribute to more than 32 million people who have died from AIDS-related illness globally (including 700,000 Americans), and support the goal of Ending the HIV Epidemic in the U.S. (EHE) and worldwide. OAR is coordinating with NIH Institutes, Centers, and Offices (ICOs) to share messaging that will continue through NIH’s World AIDS Day commemoration on December 1, 2021.

The NIH remains committed to supporting basic, clinical, and translational research to develop cutting-edge solutions for the ongoing challenges of the HIV epidemic. The scientific community has achieved groundbreaking advances in the understanding of basic virology, human immunology, and HIV pathogenesis and has led the development of safe, effective antiretroviral medications and effective interventions to prevent HIV acquisition and transmission.

Nevertheless, HIV remains a serious public health issue.

NIH established the OAR in 1988 to ensure that NIH HIV/AIDS research funding is directed at the highest priority research areas, and to facilitate maximum return on the investment. OAR’s mission is accomplished in partnership within the NIH through the ICs that plan and implement specific HIV programs or projects, coordinated by the NIH HIV/AIDS Executive Committee. As I reflect on our progress against HIV/AIDS, I would like to note the collaboration, cooperation, innovation, and other activities across the NIH ICOs in accelerating HIV/AIDS research.

Key scientific advances using novel methods and technologies have emerged in the priority areas of the NIH HIV research portfolio. Many of these advances stem from NIH-funded efforts, and all point to important directions for the NIH HIV research agenda in the coming years, particularly in the areas of new formulations of current drugs, new delivery systems, dual use of drugs for treatment and prevention, and new classes of drugs with novel strategies to treat viruses with resistance to current drug regimens.

Further development of long-lasting HIV prevention measures and treatments remains at the forefront of the NIH research portfolio on HIV/AIDS research.

NIH-funded investigators continue to uncover new details about the virus life cycle, which is crucial for the development of next generation HIV treatment approaches. Additionally, the NIH is focused on developing novel diagnostics to detect the virus as early as possible after infection.

Results in the next two years from ongoing NIH-supported HIV clinical trials will have vital implications for HIV prevention, treatment, and cure strategies going forward. For example, two NIH-funded clinical trials for HIV vaccines, Imbokodo and Mosaico, are evaluating an experimental HIV vaccine regimen designed to protect against a wide variety of global HIV strains. These studies comprise a crucial component of the NIH’s efforts to end the HIV/AIDS epidemic.

As we close on four decades of research, I look forward to the new advances aimed at prevention and treatment in the years to come.

You can play a role in efforts to help raise awareness and get involved with efforts to end the HIV epidemic. Visit OAR’s 40 Years of Progress: It’s Time to End the HIV Epidemic webpage, and use the toolkit of ready-to-go resources.

Dr. Goodenow leads the OAR in coordinating the NIH HIV/AIDS research agenda to end the HIV pandemic and improve the health of people with HIV. In addition, she is Chief of the Molecular HIV Host Interactions Laboratory at the NIH.

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.

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