Lessons on Patient and Stakeholder Engagement Strategies for Pipeline to Proposal Awards

Abstract

The Patient Centered Outcomes Research Institute (PCORI) supports patient-centered clinical comparative effectiveness research (CER) including health disparities and engagement portfolios. In 2013, PCORI launched the Pipeline to Proposal (P2P) mechanism to support development of novel patient- and stakeholder-centered partnerships focused on designing clinical CER funding proposals. By providing a tiered structure of successive small contracts and technical assistance, the P2P mechanism encourages development of new research partnerships among diverse stakeholders. As a comparatively new field, patient-centered outcomes research (PCOR) has few well-delineated methods for engaging patients and other non-scientists in effective teams with academics or clinicians to develop and implement rigorous, scientific research proposals. Community partnered participatory research (CPPR) provides a useful framework for structuring new partnerships. In this article we highlight the origins, development, and prospects of three current examples of funded P2P initiatives based in New Orleans and Los Angeles. We outline how these projects - Prisoner to Patient, the NOLA Partnership, and Resilience Among African American Men - use CPPR principles. We also describe how they have collaborated with, and contributed to, a two-way learning and knowledge exchange among members of the PCORI-funded Community and Patient Partnered Research Network. Lessons learned may be applicable to other groups planning to create new partnerships focused on implementing PCOR.

Researcher perspectives on embedding community stakeholders in T1–T2 research: A potential new model for full-spectrum translational research

“…A more bidirectional and collaborative approach to translational research requires improved understanding of several potential issues, including (1) how to meaningfully identify and involve communities from the earliest stages of research so that they can participate in establishing research agendas and priorities, study designs and the whole innovation trajectory [9,[15][16][17]; (2) how to change the culture of research at the institutional level to eliminate "siloed" working environments and undue regulatory and bureaucratic burdens that may preclude engaging community stakeholders [18]; (3) how to achieve bidirectional and iterative interaction between community and researchers [19,20]; and (4) what types of additional skills do basic scientists and community stakeholders need to engage together. Based on the discussion themes and researcher suggestions, we identified several opportunities at the UCLA CTSI level that support such an approach to address challenges and opportunities to community stakeholder engagement in basic science research (Tables 2 and 3).…”

“…Participation in translational research by community stakeholdersdefined broadly here to include patients, families, disease advocacy groups, healthcare providers, clinical researchers, faith-based organizations, and local health departmentscan help to ensure relevance and to speed up the translation of discoveries [5,6]. While strategies to engage community stakeholders in T 3 -T 4 research have begun to make positive inroads [7][8][9], community participation in T 0 -T 2 translational research is far less developed and frequently unidirectional (i.e., information transfer from scientists to communities). There remains substantial uncertainty about how to implement stakeholder engagement in early phase translation and whether stakeholder engagement can contribute positively to translational research [5,10].…”

‘You have to be almost dead before they ever really work on you in prison’: A qualitative study of formerly incarcerated women’s health care experiences during incarceration in Louisiana, U.S.

“…In 2015, a group of researchers, advocates, physicians and community‐based organisations that serve currently and formerly incarcerated people coalesced based on their personal experiences of being, treating or loving someone who received inadequate care in prison. Based in New Orleans, Louisiana, this group, known as the Prisoner to Patient (P2P) Initiative, developed a mission to conduct research, inform policy and provide services to address the health needs of currently and formerly incarcerated people (Wennerstrom et al., 2018). The group operates under the principles of community‐participatory partnered research including shared power and co‐leadership between community and academic institutions (Jones & Wells, 2007).…”

Stakeholder-engaged research is necessary across the criminal-legal spectrum

“…64 To ensure participation by persons with lived experience in research is consistent, a member of the research team may be assigned to make periodic, supportive check-ins with team members throughout the research period. 65 As detailed by the experience of Wennerstrom et. al, failure to do so can preclude their ability to balance the struggle of re-entry into community and participation in a project and can be avoided by using an "on and off the bus allowance" (see Table 1).…”