NLM Delivers for Health Services Research

How are we as a country doing in our delivery of health care?

Even if you’re happy with your access to medical care and the work of your doctor’s office or local hospital, I bet you would also acknowledge there’s significant room for improvement in the system overall.

Studying health care systems and policies and finding ways to improve them falls within the field known as health services research. Exceedingly multidisciplinary, health services research draws from medicine, public health, and an array of social sciences, including economics, political science, and psychology, to name but a few. This unique scientific community leverages the findings from basic and clinical research studies to uncover new ways to invest in and support health care—to make it safer and improve quality.

I’ve spent the last few days with members of this community at the  AcademyHealth Annual Research Meeting, and it has been a tremendous experience.

Given the multifaceted and interdisciplinary nature of health services research, conference sessions have run the gamut from Medicaid dental benefits to physician work experience, from patient safety to health economics. Other sessions—such as those on patient-centered care, electronic health records, health IT, and big data—have offered fresh perspectives on issues I’ve been wrestling with for a while.

Regardless of the topic, all the sessions I’ve attended—along with those I’ve been following virtually on Twitter (#ARM18)—have underscored for me the importance of a robust and responsive NLM to health services research.

NLM’s work to accelerate scientific discovery through data, while not targeting health services researchers specifically, will certainly help their efforts. But beyond those broad initiatives, we also have a few things just for them.

Tops on the list: the National Center for Health Services Research and Health Care Technology (NICHSR), which is housed here at NLM. Created by Congress in 1993, NICHSR (pronounced “nik-H-S-R”) is tasked with improving the collection, storage, analysis, retrieval, and dissemination of health services research. Its website and databases deliver curated information on key topics related to health services research, along with health statistics, community resources, and training opportunities.

As part of encouraging the next generation of health services researchers, NICHSR recently hosted the second annual HSRProj Research Competition. This competition invites students to use data from the Health Services Research Projects in Progress (HSRProj) database, in conjunction with other sources, to identify research gaps in health services and systems research. The winners —Julia Burgdorf, Sarah Gensheimer, and Zachary Predmore, all of the Johns Hopkins Bloomberg School of Public Health—were acknowledged at the AcademyHealth meeting.

NLM also supports research training in biomedical informatics and data science at sixteen universities across the US. These graduate and postdoctoral programs cover a range of specialties that include health care and public health informatics, training researchers to tackle some of the biggest challenges within the health care system.

We’re going to need them.

The health care system is changing, moving—we hope—toward something that is safer, more effective, more efficient, and more accessible for all. NLM is here to support that.

What would most help you in your health services research?

From Collection to Commitment

The future of scientific communication and health information is shining brightly these days. New models of communication—videos and data sets and Jupyter Notebooks, to name a few—bring the excitement of discovery, the potential of in-the-moment reproducibility, and an accelerated pace to scholarly discourse.

But what is NLM’s role in an era of memes, data warehouses, and the cloud?

To look forward, we must first look back.

NLM’s original legislative mandate emerged when paper was the dominant medium for scientific communication and articles the primary unit of scientific contribution. The Library’s work reflected that.

Long a physical repository of “library materials pertinent to medicine,” NLM acquired and organized stacks and stacks (and stacks!) of books, journals, manuscripts, dissertations, pamphlets, prints, and photographs. We published the Indexus Medicus and Index-Catalogue. Though not a lending library per se, we made our materials available through an on-site reading room, interlibrary loan, and judicious sharing with peer institutions. And we helped people find what they need within the collection through reference and research assistance.

But anyone who has used the Library in the last 50-plus years knows that each of those functions has evolved to increasingly leverage technological advances. The move to electronic journals has left us with little to purchase and even less to store. PubMed provides an online index to the medical literature. Digitized content has simplified access, streamlined interlibrary loan, and given people the ability to help themselves.

But for all these advancements, the human role remains essential.

After all, collections don’t materialize on their own. They are the result of systematic and informed choices by Library staff guided by the members of the Literature Selection Technical Review Committee and by policy.

Collections don’t describe and organize themselves. Staff in our indexing and cataloging branches add their human expertise to automated strategies to make the literature discoverable.

Collections don’t share themselves. While citation records let people know what we have, our outreach and reference staff get word out about the Library’s collections and services through a range of strategies and interactions, building awareness, research skills, and information literacy.

Collectively, that human role is becoming more active, more engaging, more purposeful, making NLM less a custodian and more a curator of health information. As scientific communication changes and evolves—and its associated content and data explode in size and multiply in demand—I expect that curatorial responsibility to grow, potentially encompassing responsibilities such as establishing quality criteria and tracking data’s provenance and versioning.

Strictly speaking, the collection will not give way, but by becoming less physical, less tangible, it will morph into a commitment—to findability, to accessibility, to usefulness.

In essence, we will shift our focus to ensuring those “library materials pertinent to medicine” remain discoverable and available in perpetuity and across the miles, whether they’re physically within these walls or not, whether they’re physical things or not. In that way, we’ll help ensure that the new models of communication deliver on their promise to accelerate scientific discovery and improve health.

Training for Lifelong Learning

To say biomedical informatics is a rapidly changing field might be an understatement. Or a truism. Probably both.

Given its interdisciplinary nature and the myriad ways each of those disciplines is changing, it’s no wonder. From advances in molecular biology to the gigantic leaps we’re making in artificial intelligence and pattern recognition, the fields that feed in to biomedical informatics are speeding forward, so we shouldn’t be surprised they’re driving biomedical informatics forward as well.

Dr. George Hripcsak’s post from last week made this point in the context of biomedical informatics training. Our trainees must be prepared to master what will likely be a never-ending series of new topics and skills, and our training programs must evolve to keep up with them. And while we can’t anticipate every twist or turn, we can prepare our trainees for the road ahead by giving them the skills to navigate change.

NLM is trying to do that.

NLM supports university-based training in biomedical informatics and data science at 16 institutions around the country. That translates into over 200 trainees supported annually.

While the university programs share common elements, in the end each is unique.  They vary in focus, with some emphasizing the informatics related to biological phenomena and others addressing clinical informatics. They also require different levels of course work. But in general, both pre- and postdoctoral trainees in these programs attend classes, participate in research projects, and are mentored to become independent researchers, earning a PhD or a Master’s degree upon completion.

Annually, the predoctoral students, postdoctoral fellows, and the faculty from the 16 university programs NLM supports get together for a two-day meeting. It’s both an honored tradition and a much-valued component of the training process—kind of a networking event crossed with an extended family reunion. In a good way.

The meeting gives trainees the opportunity to develop career-shaping networks, learn about different concentrations in biomedical informatics, and, perhaps most importantly, present posters and podium talks that both hone their scientific communications skills and promote their research. Meanwhile, the training directors and faculty get together to share best practices, discuss curriculum, and offer NLM guidance regarding future training directions and support.

This year’s training meeting—hosted just last week by Vanderbilt University—emerged for the first time from the trainees and fellows themselves.  That is, the Vanderbilt students planned the meeting (with a bit of guidance from their faculty). This shift put the meeting’s structure and content in the hands of those most likely to benefit from them—but also most likely to know what they and their colleagues need to hear.

The outcome exceeded expectations.

The opening student-only social event kicked things off, and the pace never relented. In a good way.

Podium presentations of completed research joined poster presentations of works in progress, 3-3 lightening talks (three slides, three minutes), and small group “birds of a feather” discussions around themes such as interoperability, user experience, and curation.

Regardless of what was happening though, conversations abounded. The social mixing that sometimes took a full day to occur was evident in the first few hours, making those rooms loud! In a good way.

Clearly, peer-directed learning involves a lot of conversation.

When I had the chance to address the group, I pointed out how all that conversation paralleled the careers that lie before them. That is, in such a rapidly changing field, never-ending curiosity and unrelenting inquiry are absolutely essential. Trainees and fellows must be prepared for an ever-changing world and embrace the idea that their current training programs are launch pads, not tool belts. Content mastery will get them only so far.

To respect the public investment in their careers, they must always learn, always question, always engage.

They can’t rush it. Or consider it done. Careers take a lifetime.

And NLM is committed to preparing them for that lifetime of contribution and discovery. After all, those working in a field that is ever-changing must be ever-changing themselves. In a good way.

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.