ONC has identified the use of PGHD as an important issue for advancing patient engagement, care delivery, and research. ONC has initiated a series of activities to gain more information about its value and approaches to implementing it.
In 2015, ONC began a project to identify best practices, gaps, and opportunities for progress in the collection and use of PGHD in care delivery and research through 2024. As part of the project, ONC contracted with Accenture Federal Services to write a white paper [PDF - 2.3 MB] to inform future policy work in the industry. In early 2017, the draft white paper was considered by the joint Consumer Task Force of the Health IT Policy and Standards Committees and made available for public review and comment. As a result, about 200 comments were received and considered for the final white paper published in the winter of 2018.
The Accenture team also conducted two pilot demonstrations to inform the final white paper and developed a practical guide [PDF - 383 KB]. For the pilot demonstrations, the Accenture team selected Validic to test personalized care leveraging remotely-collected PGHD across patients in partnership with Sutter Health’s diabetes-focused research study. They also selected TapCloud LLC, working with AMITA Health, to gather PGHD across several medical conditions such as orthopedic surgery, stroke, behavioral health, and kidney transplant.
The effort is part of a suite of projects focused on improving use of health IT among researchers for patient-centered outcomes research (PCOR). The PGHD policy 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, and the 2015 Edition Certification Rule.