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Building Data Infrastructure to Support Patient Centered Outcomes Research (PCOR)

Patient-Generated Health Data (PGHD)

ONC is developing a policy framework that identifies best practices, gaps, and opportunities for progress in the collection and use of PGHD for research and care delivery through 2024.

The policy framework will consider how PGHD can be collected in a way that:

  • protects the patient and the integrity of the patient record,
  • maximizes the provider-patient relationship,
  • builds confidence among providers and researchers to use these data, and
  • encourages individuals to donate their health data for research. 

The PGHD policy framework project is a necessary step towards a long-term policy solution for the successful implementation of the PGHD requirements of the Federal Health IT Strategic Plan, ONC Interoperability Roadmap, 2015 Edition Certification Rule, Stage 3 of the Meaningful Use Rule, and the administration’s Precision Medicine Initiative.

As part of a two-year project, Accenture Federal Services has been contracted to develop a white paper and conduct pilot demonstrations to test the implementation of and further refine the topics identified in the draft white paper.

To learn more about ONC PGHD-related activities and to comment on the draft white paper, visit the ONC PGHD site.