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, ClinicalTrials.gov, 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.
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.)