The National Institutes of Health (NIH) announced several major programs being launches as part of the $200 million Precision Medicine Initiative announced by President Obama last year. Among those announced were plans for a 1 million patient cohort to participate in research and an open API for all the major EHR vendors including Epic to facilitate that research.
The Precision Medicine Initiative, announced during the 2015 State of the Union Address, is a major investment in research that is broadly aimed at using “big data”, whether in the form of genetic data or step counts, to personalize medical care. Last year, the NIH began soliciting feedback on the extent to which people would be willing to participate in digital health research.
Yesterday, the NIH announced several specific programs as part of this initiative that will lay the foundation for a wave of next generation research studies that will aim to engage millions of people and collect data on an incredible scale. Included are plans for a Precision Medicine Initiative Cohort of one million patients.
The NIH announced a grant to support a pilot for this massive undertaking led by Verily, the health division spun off from Google as part of its reorganization as Alphabet, and Vanderbilt University.
[The NIH] announces an award to Vanderbilt University in collaboration with Verily (formerly Google Life Sciences) to launch the first phase of the Precision Medicine Initiative Cohort, which will lay the foundation for a national community of 1 million or more U.S. volunteers who will partner with researchers, share data, and engage in research to transform our understanding of health and disease through precision medicine.
Also included in this collaboration are the University of Michigan and the Broad Institute, an independent research organization. The pilot project will test strategies to run this study in an initial cohort of nearly 80,000 people by the end of the year.
Digital cohort studies have taken off in recent years, led first by the Health eHeart study out of UCSF that launched several years ago with the aim of recruiting a million patients in a modern day Framingham cohort study. A year after launch, that study had enrolled just over 10,000 participants. More recently, they received a $10 million grant from the NIH to develop Health ePeople, a platform to facilitate digital health research.
More recently, several new digital cohort studies have launched powered by Apple’s ResearchKit platform. Stanford’s MyHeart Counts app, a cardiovascular disease research study, had a more brisk recruitment pace with over 40,000 participants about six months after launch. And then of course, there’s Google/Verily’s Baseline Study
Its worth noting though that we have yet to see results of any kind from Health eHeart, MyHeart Counts, and similar studies. There are certainly challenges in doing this kind of research like ensuring accurate data collection, adapting to new technology, and keeping participants engaged.
Many of these issues are going to looked at during the Vanderbilt/Verily pilot. Another challenge is making sure the study includes a diverse, representative population. To do that, the NIH is working with the Health Resources and Services Administration to partner with experienced health centers to develop strategies to engage underrepresented populations.
Backed by the NIH and the Precision Medicine Initiative, this study could collect data on an unprecedented scale and scope, driving insights that could ultimately change how we deliver health care.
Source: White House Press Release