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Latitudes November 19th, 2018
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Jul

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All of Us: Imagining the Future; Pondering the Past – Health Information for Public Librarians Symposium, Atlanta 2018

Posted by on July 23rd, 2018 Posted in: Advocacy, All of Us, Consumer Health, Data, Funding, Precision Medicine, Training


by Peg Eby-Jager, A.M.L.S.
Librarian | Consumer Health Information Specialist

“All is flux; nothing is stationary.”
Heraclitus (c.535 – c.475 BC)

“Just when I discovered the meaning of life, they changed it.”
George Carlin (1937 – 2008)

CHIS Quest
When I found out about the Public Librarians Symposium, late and serendipitously, I’d been scouting for continuing education credits in light of a fast approaching deadline for renewing my Consumer Health Information Specialization (CHIS) certificate. I was a surprised to learn that travel awards were available to public librarians as well. Great news! My thoughts then quickly shifted back to the sobering present with the realization that I’d need to be in Atlanta in about three weeks. Quick work, collegiality, and good fortune were needed, and thankfully everything fell into place. I registered for the meeting, booked travel and accommodations, and leveraged a change in my work schedule. Being awarded a travel grant was, as they say, just gravy, and I was looking forward to attending the Symposium, earning CHIS credits, connecting with colleagues, and learning about the All of Us Research Program – a precision medicine initiative that I knew next to nothing about.

The Symposium

“This year’s conference also offers something special: a symposium dedicated to health information for public librarians…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 the communities.”

From NLM Director’s blog, Musings from the Mezzanine

All of Us

“The All of Us Research Program, is a historic effort to gather data from one million or more people living in the United States to accelerate research and improve health. By taking into account individual differences in lifestyle, environment, and biology, researchers will uncover paths toward delivering precision medicine.”

 

I was in the go-mode for Atlanta. But first, gentle reader, a brief detour through patient data history.

Interest in Consumer Health
The one constant among my professional interests since earning a library degree in 1985 is my abiding interest in consumer health information. And during those thirty-plus years, there have been seismic changes in virtually every aspect of health care – patient records included. My first job as a freshly minted librarian was with the Commission on Professional and Hospital Activities (CPHA), a think tank, whose primary data asset comprised anonymous, patient-level records supplied by over 25% of North American acute care facilities. That was a huge data set, to be sure. However, the limitations of those records compared to what I would be hearing about at the Symposium makes all the difference between planting a single seed and the bounty reaped from a worldwide harvest.

Among CPHA’s many study reports and products was an annual series of books that listed average length of hospital stay, organized by diagnoses and stratified by a few additional criteria. It would never make the NY Times best-seller list, but it was CPHA’s hot product, bringing in significant income that fueled research. And CPHA was pushing the envelope, as their public health researchers worked to develop new analytical models yielding a more precise picture of how precious medical resources were being utilized.

Finding ways to accurately measure utilization of medical resources was The Holy Grail. But in the 1980s, CPHA’s anonymous hospital discharge records offered only a static slice of patient data and were not linked to any longitudinal cohort. Further, patient medical records were typically handwritten by physicians and stored in paper files in their offices. The necessary technology and infrastructure did not yet exist.

book titled Length of Stay showing the front cover and the book opened to pages with lots of data

In 1985, the availability of patient data from longitudinal studies was greatly limited. “Length of Stay” data were derived from anonymous hospital discharge records and were not linked to patient medical records. (Photo credit: Peg Eby-Jager)

To be clear: back in the day, CPHA’s published studies and data products were a big deal. It wasn’t unusual for a client to refer to us as “the only game in town.” But the All of Us Program, as I would soon learn at the Symposium, intends to change the game entirely. Building and sustaining the largest, most diverse, markedly innovative, longitudinal patient data set is the goal. “Change” hardly describes what is in store; a better term would be “reinvention.”

And what better place than Atlanta, a city that has reinvented itself time after time, to begin learning about All of Us?

MLA & M.J.T.
Day One of the Symposium began with a beautiful buffet breakfast offering a range of choices from bacon-and-eggs to copious fresh fruits and yogurt. My body clock was still set on PDT, but a second cup of coffee fueled a speedy circumnavigation of the Hyatt’s Regency Ballroom. Tables were quickly filling, the Symposium would soon kick off, and I didn’t see a single familiar face.

Mary-Kate Finnegan presenting a poster at a symposium

Mary-Kate Finnegan from University of the Pacific in Stockton presenting a poster at the symposium

Pretty quickly, I was invited to join a table near the podium. A friendly person called me over, and introduced herself as “M.J. Tooey,” whose name that I recognized as a past president of MLA. After a warm welcome, introductions, and a little get-acquainted chat with everyone at the table, M.J. clued me in on what to expect at the kickoff.

I had closely followed MLA’s pre-conference planning instructions, and I’d studied the presentations and posters that would be available to Symposium attendees. I knew which presentations I’d attend and which posters I wanted to see. I’d familiarized myself with the Hyatt map, and I knew where to be and when to be there. I definitely had a plan. But M.J. Tooey made sure that I knew that Patti Brennan, the current director of the National Library of Medicine, would soon be joining our table prior to giving her keynote speech. And that was just so very thoughtful and considerate of her. Moments like this leave lasting impressions.

Data-Driven Discovery
Patti Brennan’s keynote focused on “data-powered health” and the critical role of the All of Us Research Program’s one million-plus cohort to the future of precision medicine. Beginning with a quick overview of NLM’s strategic plan, she invited us to consider that every research article begets its own data set, and then to imagine the biomedical discovery implications of harnessing vast quantities of data that are made widely available. She talked about the need to find new ways to get information into the hands of laypeople and how those data could be used by citizen scientists. Dr. Brennan compellingly argued that massive data resources offer a “foundational substrate” for knowledge and discovery, and that the All of Us data set will be a prime factor in data-driven biomedical discovery.

Dr. Brennan is focused on a future in which myriad data-rich resources are widely available. She spoke about radical new possibilities for understanding health rather than focusing primarily on the study of disease states. But a diverse data set is key to success, and building a representationally diverse cohort of over one million people contributing data and biosamples will not be easy. The massive scale of the project is simply mind-boggling.

Data-Data-Data!

Patti Brennan writes regularly about the value of that ambitiously imagined, data-driven future on her blog, NLM Musings from the Mezzanine. “[W]e released NLM’s strategic plan, A Platform for Biomedical Discovery and Data-Powered Health. Concurrently the National Institutes of Health announced a draft Strategic Plan for Data Science.”

Precision Medicine

“[P]recision medicine is ‘an emerging approach for disease treatment and prevention that takes into account individual variability in genes, environment, and lifestyle for each person.’ …It is in contrast to a one-size-fits-all approach, in which disease treatment and prevention strategies are developed for the average person, with less consideration for the differences between individuals.”

From Genetics Home Reference

 

All of Us and Public Librarians
Public librarians may play a role in helping to raise awareness of the All of Us Research Program, and Dr. Brennan raised the question of how that role could be fostered. Toward the end of her talk, she posed the question of what can be done to assist public libraries, and I’ll be interested to see what sort of outreach takes place. Public librarians, however, do not need to wait for direction. MLA’s Consumer Health Information Specialization (CHIS) offers an excellent starting point.

I truly enjoyed the CHIS courses I took, and after completing Level I requirements, I pushed a little harder and earned a Level II certificate. I learned a lot, and I’d encourage my public library colleagues – not just librarians, but paraprofessionals as well – to take an introductory course. Building on my public service skills and more effectively helping patrons achieve greater health literacy is the greatest benefit of CHIS coursework. There is no charge for the courses; you can pace yourself. And there’s no pressure to complete work on a certificate. The bottom line is that the benefits are well worth the effort, for us and for our patrons!

CHIS

“By earning your CHIS, you acquire skills and knowledge needed to become a confident, expert provider of health information to your community.” Learn more about CHIS at the Medical Library Association website. NNLM offers a sponsorship which covers the CHIS application fee for library personnel who take the required number of courses.

CHIS Courses

  • Beyond an Apple a Day: Providing Consumer Health Information at Your Library
  • Stand Up for Health: Health and Wellness Services for Your Community

Find more CHIS opportunities by browsing the list of all NNLM classes.

Image of the author ABOUT Alan Carr
Alan Carr is the Associate Director, National Network of Libraries of Medicine, Pacific Southwest Region, based at UCLA.

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This project is funded by the National Library of Medicine, National Institutes of Health, Department of Health and Human Services, under Cooperative Agreement Number UG4LM012341 with the UCLA Louise M. Darling Biomedical Library.

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