A major component of the Precision Medicine Initiative (PMI), announced by President Obama in January, is the PMI Cohort Program (PMI-CP) – a new research cohort of a million or more volunteer participants. This research cohort will help to expand our knowledge and practice of individualized care.
Last week, the Advisory Committee to the NIH Director released its recommendations for how that cohort should be shaped and implemented. We have outlined the main points below, however you also may find the full report here.

According to an NIH press release, the scientific opportunities presented by this cohort is the ability to:

  • develop risk estimates for a variety of diseases by taking into account environmental exposures (everything you encounter on a daily basis that can impact your health, for example toxins, food, stress), genetic factors (heredity and what’s in your DNA) and gene-environment interactions;
  • identify why certain drug treatments are more effective in some individuals than others;
  • discover how your specific genetic make up may signal increased or decreased risk of developing common diseases;
  • use mobile health (mHealth) technologies to identify trends between activity, health stats and environmental exposures with health outcomes;
  • develop new disease classifications and relationships;
  • empower study participants with data and information to improve their own health; and
  • create a platform to enable trials of targeted therapies.

The report also proposed two methods to recruit research participants. The first would allow any individual living in America to volunteer for the PMI cohort as a “direct volunteer.” The second would be to collaborate with healthcare providers. “NIH plans to move quickly to build the infrastructure so that participants can begin enrolling in the cohort in 2016, with a goal of enrolling at least 1 million participants in three to four years,” stated yesterday’s release.

We are particularly excited about the essential role of both mobile heath technology and data sharing will play in the success of this cohort. An undertaking of this kind would not be possible without open collaboration and flow data and ideas supported by groundbreaking digital technology.

If you are interested in hearing more about this report and its recommendations, Dr. Francis Collins, NIH Director, and Dr. Kathy Hudson, NIH Deputy Director for Science, Outreach, and Policy, and the White House Office of Science and Technology Policy will hold a discussion on September 22, 2015 from 1:30 PM – 2:30 PM Eastern Time on Twitter using the hashtag #PMINetwork.