People-powered data collaboratives: fueling data science with the health-related experiences of individuals

J Am Med Inform Assoc. 2019 Feb 1;26(2):159-161. doi: 10.1093/jamia/ocy159.


The creation of people-driven data collaboratives, with governance structures that enable participants to have a meaningful voice in issues surrounding the use of their own data, is a novel strategy to harness our growing capacity to develop and maintain immense data assets from the real health experiences of individuals.

Publication types

  • Research Support, N.I.H., Extramural
  • Research Support, Non-U.S. Gov't

MeSH terms

  • Cooperative Behavior
  • Data Science / organization & administration*
  • Humans
  • Informed Consent
  • Patient Participation*