Building a Patient Stakeholder Council and Patient Partner Registry: Resources for Patients and Researchers
patient engagement, patient-centered outcomes research
Background/Aims: Patient input is critical to ensuring that research studies and their outcomes are relevant to patient priorities and needs. Research teams need a way to quickly identify appropriate patient partners for engaged research, and patients anxious for a voice in research need a way to access research teams and organizations. The Patient Stakeholder Council (PSC) and Colorado Patient Partners in Research (CoPPiR) network address these needs. The PSC broadly informs research agendas while the CoPPiR network connects patients with research teams, giving teams a way to rapidly identify, contact and recruit patient partners with specific characteristics.
Methods: Kaiser Permanente Colorado’s Institute for Health Research, Denver Health’s Center for Health Systems Research (CHSR), and the CHSR’s Community Advisory Panel are partnering equally to create these resources, and methods will be the focus of this presentation. All three partners defined the purpose and goals of the PSC and are collaborating to recruit and train all members of the PSC. Simultaneously, the three partners are building the CoPPiR network infrastructure. The CoPPiR website provides a centralized means of providing information about the network, facilitating recruitment of members and responding to requests from individual research teams. Both resources explicitly prioritize recruitment of members reflecting the demographic, socioeconomic and racial/ethnic characteristics of these two health system memberships.
Results: The outcomes of the successful creation of both the PSC and the CoPPiR network include improving research teams’ abilities to write patient-centered research proposals and conduct studies whose outcomes are more relevant to patient populations. Equally important is the empowerment of patient research partners to influence overall research agendas and, in individual research studies, to voice concerns, insights and preferences of patients.
Conclusion: Tackling the needs of both patients and researchers in the development of engagement resources provides a win-win in the effort to increase the quality and meaningfulness of patient-centered outcomes research. Further, establishing both a broadly focused panel and a mechanism for matching patient partners with specific research teams to provide deeper insights on a particular disease burden or health condition effectively addresses distinct needs of research organizations and provides a model for replication elsewhere.
Madrid S, Wright L, Tabano H. Building a patient stakeholder council and patient partner registry: resources for patients and researchers. J Patient Cent Res Rev. 2016;3:221.