The Role of Libraries in Precision Health

Eric Dishman delivers the 2018 Leiter Lecture

The NIH All of Us Research Program and NLM’s National Network of Libraries of Medicine have partnered to boost awareness of the All of Us program that seeks to collect health data from one million people nationwide to accelerate research and improve health. The resulting data set will help researchers take into account individual differences in lifestyle, environment, and biology as they chart a path toward precision health.

Eric Dishman, Director of the All of Us Research Program, came to NLM in early May to tell us all about it during the annual Joseph Leiter Lecture. Eric’s remarks, titled “Precision Communication for Precision Health: Challenges & Strategies for Reaching All of Us,” got personal, sparked laughter, and electrified the audience by shaping a crystal clear vision of what precision medicine can do for us.

I was thrilled. Eric is a longtime friend, colleague, and co-conspirator in pushing the world of biomedical informatics and clinical research out into the community. Together, we make quite the team, bringing to the effort different professional and academic perspectives—he an anthropologist previously working in commercial R&D, me a nurse and industrial engineer coming out of academic research. But we share a passion for improving health and we’re both blessed with the gift of gab, which we’ve used to persuade others to recognize that true patient-centered care requires bringing technology to the point of health—which, of course, is often in people’s bedrooms or kitchens.

Ultimately, Eric and I sing from the same song book: technology should support health in everyday living. And now we’re both singing that song at NIH, helping turn discovery into health.

Eric’s journey to NIH actually began—as these things sometimes do—in college, but not in the way you might think.

Eric was diagnosed with kidney cancer as a college sophomore and fought a 23-year battle with the disease before getting a clean bill of health. He survived, in part, he said, by actively pursuing his medical records, keeping up with emerging research, and tapping into the wisdom of other patients.

Until he was preparing for the Leiter Lecture, however, he had not fully recognized how important a role his mother played in that particular part of the fight. In the struggle to be an informed and proactive patient, she taught him essential survival skills, including recognizing and searching trusted sources, and using information as a foundation for self-advocacy.

Eric’s mother, you see, was a librarian, and, according to him, “a master of precision communication.” In thinking about her and the way she shaped his journey through the health care system, Eric identified several things that everyone needs to know—if they don’t already—about librarians and personal health:

  • Information really can lead to ability or dis-ability, life or death.
  • Libraries can provide anywhere from the 2nd to the 152nd opinion in a complex health situation.
  • The impact a library or librarian can have on someone’s quality of life is probably immeasurable.
  • Clinician appraisal is only part of the view. None of us is the average patient, and there can be huge evidence gaps.
  • While resources like PubMed,, and MEDLINE are crucial, libraries located in communities provide “safe, neutral spaces” and their amazing curators/navigators help “tame the overwhelm” of too many books, too many articles, and too many URLs.

These benefits highlight why the All of Us Research Program is partnering with the National Network of Libraries of Medicine (NNLM) to boost community awareness of and engagement in the program and to improve health literacy, both within communities and among program participants. These libraries are natural advocates for privacy, transparency, authority, and objectivity—all key elements in biomedical research—and, as trusted and active members of their towns and cities, open to all-comers, they provide an established way to reach those groups historically underrepresented in biomedical research, such as women, minorities, and people with disabilities.

The All of Us initiative is driven by three underlying principles:

  • All health care (and research) is local.
  • Meet people where they are.
  • Deliver double value.

All three point to the essential role for public libraries within the All of Us program. The connection of the first two to libraries is obvious, but the third warrants a little elaboration.

To Eric, “double value” means that the research undertaken and the data collected should address the needs of both the scientists using the data and the participants producing them. That is why, in addition to collecting data that will feed generations of research, the All of Us Program promises to return all personal data collected to the individual participants who provided them.

While clinicians may help participants interpret that data, libraries will play a key role in giving participants a neutral, trusted, life-positive place to better understand and apply their health data in the context of their lives.

This year’s Leiter Lecture truly delivered “double value.” We got to hear from an inspirational leader about an inspiring message grounded in life experience and his own discovery of an important life influence. (Doesn’t that sound like Joe Leiter himself?!)

So, it’s fitting that Eric Dishman delivered the 2018 Joseph Leiter Lecture. These two giants have transformed the health information landscape. Both recognized the power of information and the power of computing and brought them together to make something wonderful!

You might say that’s double value—squared.

More information
2018 Joseph Leiter Lecture by Eric Dishman (video), “Precision Communication for Precision Health: Challenges & Strategies for Reaching All of Us” (National Library of Medicine, Wednesday, May 9, 2018)

The annual Joseph Leiter Lecture, jointly sponsored by the National Library of Medicine and the Medical Library Association, was established to stimulate the intellectual liaison between the two organizations on topics relating to biomedical communications. The lecture’s venue alternates between the MLA annual meeting and the NLM campus. I delivered the Leiter Lecture last year during MLA. (Note: Recording available only to members of MLA.)

Public Libraries: Partners in Health

Are you in Atlanta today? If not, you’re missing MLA ’18, a four-day extravaganza of all things related to medical librarianship. Sponsored by the Medical Library Association (MLA), the conference offers training, policy presentations, and career building strategies, plus endless opportunities to network and to reconnect with colleagues and friends.

This year’s conference also offers something special: a symposium dedicated to health information for public librarians. The symposium is designed to help public librarians develop skills in providing consumer health information to enhance health and well-being and to encourage and expand health literacy throughout their communities.

Running concurrently with the final day and a half of the conference, the symposium began this morning and will run through midday tomorrow, when attendees will get to hear two powerful keynotes from Dr. Dara Richardson-Heron, Chief Engagement Officer of the All of Us Research Program at NIH, and Dr. David Satcher, the 16th Surgeon General of the United States and founding director of the Satcher Health Leadership Institute at Morehouse School of Medicine.

Funded by grants through the National Network of Libraries of Medicine (NNLM), the symposium was organized by MLA in collaboration with the Public Library Association, NNLM’s Greater Midwest Region, and members of the MLA Consumer and Patient Health Information Section.

These kinds of partnerships are invaluable, often making the impossible possible.

NLM’s ongoing partnership with public libraries is one more example. Partnering with public libraries has been an NLM essential for decades. Along with hospital and health sciences libraries, public libraries provide NLM with points of presence around the country. In fact, through the NNLM’s 6,800+ members, NLM reaches into almost every county in the United States.

That reach is powerful. By serving as community centers and information hubs, public libraries provide us with a special pathway to the American public. And with their unique knowledge of their communities, public librarians help us understand how best to serve the people living in those communities.

That is why public libraries play a key role in advancing NIH’s new precision medicine program, All of Us.

This ambitious initiative will recruit one million people—especially those historically underrepresented in biomedical research—into a new kind of scientific discovery effort that engages people in the research process and improves health by taking into account individual differences in biology, environment, and lifestyle. Participants will help researchers make discoveries that may help future generations, and in turn, participants will receive all the data and information collected about themselves, as well as certain study results.

That’s where public libraries step in. Public librarians will work to engage their local communities, raise awareness about and understanding of the program, boost overall health literacy, and help program participants comprehend and interpret their own information.

In turn, NLM will support the librarians, training them to use our resources and providing health information they can share. We will also listen to them to learn about the health concerns of their communities, using those insights to improve our resources and to provide information that is responsive, culturally sensitive, and contextually relevant.

So today, while we activate and celebrate our partnerships with public libraries at the MLA meeting and symposium, we remember and recognize that NLM’s real value comes not from what we do on the NIH campus in Bethesda, but in what information reaches the health lives of people everywhere. Public libraries help make that possible.

By the way, if you can’t be in Atlanta but want to feel like you are, follow the hashtag #mlanet18 on Twitter. And later this month, check the NLM website for recordings of all our theater presentations.

NIH Draft Strategic Plan for Data Science: Suggestions for Optimizing Value

Guest post by Dr. William Hersh, professor and chair of the Department of Medical Informatics and Clinical Epidemiology, School of Medicine, Oregon Health & Science University.

Earlier this year, the National Institutes of Health (NIH) issued a Request for Information (RFI) soliciting input for their draft Strategic Plan for Data Science. As I did for the National Library of Medicine’s (NLM) RFI concerning next-generation data science challenges in health and biomedicine, I shared my comments on the data science plan through both the formal submission mechanism and my blog. (See also my blog comments on the NLM RFI.) I appreciate being asked to update my comments on the draft NIH data science plan in this guest post.

The draft NIH data science plan is a well-motivated and well-written overview of the path NIH should follow to ensure that the value of data science is leveraged to maximize its benefit to biomedical research and human health. The goals of connecting all NIH and other relevant data, modernizing the ecosystem, developing tools and the workforce skills to use it, and making it sustainable are all important and articulated well in the draft plan.

However, collecting and analyzing the data, along with building tools and training the workforce to use the data, are not enough. Three additional aspects not adequately addressed in the draft are critical to achieving the value of data science in biomedical research.

The first of these is the establishment of a research agenda around data science itself. We still do not understand all the best practices and other nuances around the optimal use of data science in biomedical research and human health. Questions remain regarding how best to standardize data for use and re-use. What standards are needed for best use of data? Where are the gaps in our current standards that we can address to improve the use of data in biomedical research, especially data not originally collected for research purposes (such as clinical data from electronic health records and patient data from wearables, sensors, or that is directly entered)?

We must also research more extensively the human factors around data use. How do we organize workflows for optimal input, extraction, and utilization of data? What are the best human-computer interfaces for such work? How do we balance personal privacy and security against the public good of learning from such data? What ethical issues must be addressed?

The second inadequately addressed aspect concerns the workforce for data science. While the draft properly notes the critical need to train specialists in data science, it does not explicitly mention the discipline that has been at the forefront of “data science” before the term came into widespread use, namely, biomedical informatics. NLM has helped train a wide spectrum of those who work in data science, from the specialists who carry out the direct work to the applied professionals who work with researchers, the public, and other implementers. NIH should acknowledge and leverage this workforce that will analyze and apply the results of data science work. The large number of biomedical (and related flavors of) informatics programs should expand their established role in translating data science from research to practice.

The final underspecified aspect concerns the organizational home for data science within NIH. Many traditional NLM grantees, including this author, have been funded under the NIH Big Data to Knowledge (BD2K) program launched several years ago. The newly released NLM Strategic Plan includes a focus on data science and goes beyond some of the limitations of the draft NIH data science plan described above, making the NLM the logical home for data science within NIH.

By addressing these concerns, the NIH data science plan can make an important contribution to realizing the potential for data science in improving human health as well as preventing and treating disease.

headshot of Dr. Hersh William Hersh, MD, FACMI, serves as professor and chair of the Department of Medical Informatics & Clinical Epidemiology, School of Medicine, Oregon Health & Science University. His current work is focused on the workforce needed to implement health information technology, especially in clinical settings, and he is active in clinical and translational research informatics.

Health and the Economy

Insights from the Surgeon General

I’ve written before about the intellectual and personal thrill I get working with the NLM Board of Regents. Their expertise, their unique perspectives, and their passion make our two-day meetings fly by, and their ideas drive the Library forward.

At this week’s Board meeting, some powerful insights came from the new US Surgeon General, Vice Admiral Jerome Adams, MD, MPH.

As the Surgeon General, Dr. Adams is one of nine ex officio members on the Board of Regents, but he also enjoys a special privilege—namely, presenting to the Board at every meeting. That long-standing tradition helps ensure our work aligns with the Surgeon General’s priorities to improve the country’s health.

Over the years, those priorities have focused on such issues as reducing health disparities, preventing skin cancer, and going tobacco-free. But Dr. Adams brings a fresh agenda: the connection between health and the economy.

I can’t do justice to his vision and his passion, so let’s jump into his recent post on the HealthAffairs blog, which lays out his thinking and calls for private and public institutions to come together “to maximize quality, health-nurturing employment opportunities for all US citizens who are able to work.”

Improving Individual and Community Health Through Better Employment Opportunities
by Jerome M. Adams | May 8, 2018

Employment and job creation build prosperity and carry important health benefits, both for individuals and entire communities. There is a large and growing body of literature demonstrating a positive correlation between employment and individual and community health.

Employment can be defined as a contractual relationship between the worker and an employer for financial or other reward that is sustained over a period of time. It can be used as a socially acceptable means of earning a living and may involve a set of technical and social tasks performed within certain physical and social contexts. In the US, employment serves as the main source of income of the country’s residents.

Across multiple studies, higher income was consistently associated with better health, including a reduced overall risk of mortality and reduced rates of such chronic diseases as heart disease, diabetes, and stroke. Mortality rates are lower among those who are employed compared to the unemployed. Re-employment after a period of being out of a job has beneficial effects on physical health, psychological distress, and certain psychiatric conditions. Employment also reduces the risk of depression and psychological distress, improves general mental health, and, over time, predicts a positive trend in perceived health and physical functioning in both women and men. Quality employment can be beneficial to people with physical and mental disabilities who are able to work. One important caveat is that the relationship between employment and health and well-being is moderated by job quality and there is a growing literature that low-security, high-stress, or long-hour/shift jobs may not benefit and could actually harm employees’ health.

[Read the full post on HealthAffairs]

Celebrating Nurses’ Ways of Knowing

In honor of National Nurses Week, this nurse—now library director—is wondering how NLM, the world’s largest repository of biomedical knowledge, serves nurses and nursing.

Certainly, the Library—with its rich collections and extensive services—addresses the scientific, scholarly practice of nursing well, but what about the other dimensions of nurses’ ways of knowing?

In 1975, for her doctoral dissertation, Barbara Carper explored the published writings of nurses and works about nursing and found through her analysis a structure or typology to the practice of nursing. She labeled this typology “patterns of knowing” and proposed that the following four patterns work together to inform how nurses know patients and how to care for them:

  • Empirics, the science of nursing
  • Esthetics, the art of nursing
  • Personal, the therapeutic use of self
  • Ethics, the moral reasoning base of nursing

The empirical foundations of nursing arise from systematic inquiry, whether experimental, naturalistic, or observational. Nurses “know” about human response through controlled studies, though science, and as the emphasis on empirical foundations grew through the 20th century, nursing embraced the ideals of evidence-based practice.

But Carper’s influential work affirmed that the real practice of nursing went beyond science and, in fact, is significantly shaped by the other three patterns of knowing.

Esthetics as a means of knowing in nursing is part perception, part empathy, and part action. As the “art” in the practice of nursing, it involves paying attention to a patient’s health concerns and behaviors, along with scattered, relevant details and intangibles, and integrating them into a holistic understanding of the person and what she needs. It provides the creative spark that leads a nurse to know both what to do and how to get it done—that is, how to approach a patient and address her therapeutic needs.

Personal knowing reflects the engagement between nurse and patient. It demands that a nurse know himself so that he can approach the patient as a person and form an authentic relationship. Then, through that relationship, the nurse can apply scientific knowledge to help.

Ethical knowing focuses on “matters of obligation or what ought to be done.” Lying at the foundation of action, ethics requires judgment about what to do and what not to do. It arises as a complex consequence of learning, deliberation, and engagement with the standards, codes, and values of the profession and society.

As Carper noted, these four kinds of knowing “provide the discipline with its particular perspectives and significance.” As such, all four are important to the practice of nursing—and by extension, to the work of the National Library of Medicine.

NLM counts among its collections many of nursing’s important foundational, theoretical, and empirical articles and books. We preserve monographs that explore the nurse-patient relationship and that provide guidance for integrating the various ways of knowing others into clinical interventions. Our History of Medicine Division holds photographs and drawings that depict the healing dialogue between patients and nurses. And we have materials that reflect on the ethical premises for care.

Where I think we fall short is in the realm of personal knowing.

Perhaps NLM privileges what is shared and publicly validated, such as scientific articles, over nurses’ personal stories of knowing self and knowing others. It’s also possible that the language for documenting the personal knowing patterns of nursing doesn’t quite convey its essence. Maybe the personal knowing of nursing is indeed ephemeral and dissipates even if it is captured.

That said, I want NLM to support all of nursing’s patterns of knowing—to include descriptions of how one observes, studies, and verifies these patterns; to present the results of these patterns so the human experience is fully depicted; and to document the clinical impact of fully knowing a person.

I don’t quite know what that support might look like. We might find that words are not enough, and the best way NLM can support nursing’s patterns of knowing awaits future discoveries.

That’s why I invite you to come along with me to make sure this important perspective on the knowledge of health remains present and vibrant among our holdings. We owe it to nursing, and we owe it to ourselves.