Building Infrastructure to Recruit, Hire and Engage Patient Partners in Research Collaborations
patient engagement, toolkit
Background/Aims: Funding agencies like the Patient-Centered Outcomes Research Institute (PCORI) are requiring that health-related research engage patients in new and more integrated ways, such as employing patient co-investigators. HMORN researchers have often engaged patients in an advisory capacity and are now expanding ways to collaborate. This work builds on Kaiser Permanente Colorado’s Institute for Health Research Member Engagement Toolkit and the HMORN Patient Engagement in Research (PER) Interest Group’s environmental scan of tools, practices and gaps. The aims of our project are to: 1) develop a toolkit to recruit, hire and orient patient researchers and their research teams, and 2) develop patient community forums to solicit ideas about patient-centered research projects.
Methods: We will conduct semistructured interviews with PCORI research teams, delivery system partners and members of the PER Interest Group. Feedback from these interviews will be used to adapt existing tools or develop new ones to recruit, hire and orient patient investigators and their teams. To develop patient forums, we will work with Group Health’s Governance Services, Communication and Clinical Improvement and Prevention departments to utilize existing communication methods and/or create new ones. We will pilot test and evaluate the usability of the resources with project teams submitting new grant proposals.
Results: We will present preliminary insights from these interviews and initial work on forum development. Our presentation will be aimed at both generating additional discussion and feedback and helping apprise the field of practices that are cutting edge in this area of health services research. Already, Group Health teams working on PCORI projects have learned valuable lessons about the benefits of partnering with patient investigators, “They ask great questions and they have blown our assumptions out of the water.” We also have learned about important barriers, “Computer skills or knowledge of human subjects research should not be assumed.” Our project builds on this experience to improve our capacity to collaborate with patient research partners.
Discussion: The HMORN is well-positioned to be a leader in patient-centered outcomes research. This project builds on the experience, existing resources and current partnerships within the HMORN to develop innovative and proactive patient engagement infrastructure for health research and evaluation.
Tuzzio L, Richards JE, Ludman EJ, Hsu C. Building Infrastructure to Recruit, Hire and Engage Patient Partners in Research Collaborations. J Patient Cent Res Rev 2015;2:136-137. http://dx.doi.org/10.17294/2330-0698.1186