Dive Brief:
- A new federal database with 1 million EHRs will utilize data from mobile health devices and “correlate activity, physiologic measures and environmental exposures with health outcomes,” according to Modern Healthcare.
- The project will recruit volunteers who will have a health exam, provide a biospecimen, agree to share their electronic medical records and agree to be re-contacted. NIH estimates it could recruit 1 million volunteers over just four years.
- Part of President Obama’s Precision Medicine Initiative, with $130 million in funding (fiscal 2016), NIH director Dr. Francis Collins said he’s optimistic Congress will support the database.
Dive Insight:
Those participating in the database will be protected by federal rules that include a more precise consent for the reuse of stored blood or tissue in new research unrelated to their original use. Collins told Modern Healthcare the project will not have funding to do whole genomic sequencing on 1 million people, which would cost an estimated $2 billion.
The report for the plan said one of its goals is to replicate developments like targeted treatments for cancer and cystic fibrosis that are effective in patients who share an underlying causal genotype. Collins said in a separate statement the program “will change the way we do research. Participants will be partners in research, not subjects and will have access to a wide range of study results. What we’re doing with the Precision Medicine Initiative cohort is intersecting in a synergistic way with other fundamental changes in medicine and research to empower Americans to live healthier lives.”
Dr. Josephine Briggs, director of the National Center for Complementary and Integrative Health at NIH, has been named as interim director of the project.
