On June 19, 2014, the Partnership to Improve Patient Care (PIPC) and Families USA co-hosted a roundtable discussion on “Accountability for Patient Engagement in Research and Dissemination.” The purpose was to move beyond a discussion of the points of engagement, and focus on who is accountable for patient engagement, and what makes engagement meaningful. It was noted, and agreed by participants, that a goal of patient engagement is real patient empowerment and activation in their health care. A focus of the discussion was implementation of the Patient-Centered Outcomes Research Institute (PCORI), which is creating a precedent for patient engagement practices in research that could be modeled by other entities.
Participants in the roundtable discussion included representatives of PCORI Advisory Panels, members of PIPC, and non-profit organizations representing patients. During introductions, participants described their varied personal experiences with the health care system and with patient and community engagement in research and dissemination. Participants had expertise working with PCORI, the Agency for Healthcare Research and Quality (AHRQ), and the National Institutes of Health (NIH) - some as analysts, others as patient representatives, and others as researchers.
| pipc_and_families_usa_summary_and_recomendations.pdf |