Applying a community-based participatory research framework to patient and family engagement in the development of patient-centered outcomes research and practice

Abstract

There has been increasing recognition of the need to engage patients, families, and other patient stakeholders in research. This article seeks to provide understanding and examples of how to apply core principles of community-based participatory research (CBPR) in developing patient-centered outcomes research (PCOR) that can impact clinical and public health practice. Authors review CBPR principles and demonstrate how to translate them into effective PCOR strategies. Common themes of CBPR principles and PCOR strategies are related to: (a) fostering joint ownership in the identification of health priorities, the development and evaluation of research strategies and their design, and the dissemination of findings; (b) a keen recognition and appreciation for the importance of stakeholder-driven priorities, research, and solutions; (c) building capacity of both stakeholders and researchers to engage in research collaboratively; and (d) recognizing that conducting the research is not the endpoint but continues on with a commitment to dissemination, spread, adoption and sustainability. The authors highlight the specific strategies in which these CBPR principles can be translated for use in engaging patients and families, and including other stakeholders such as care providers, community partner organizations, health systems, and insurers, in the research process to ensure the development of PCOR.

Frameworks for supporting patient and public involvement in research: Systematic review and co‐design pilot

“…A total of 56 frameworks were written up in 55 academic papers. 5,10,12,31,[33][34][35][36][38][39][40][41][42][43][44][45][47][48][49][50]52,53,[55][56][57][60][61][62][63][64][65][66][67][69][70][71][72][73][74][75][76][77][78][79][80][81][82][83][84][87][88][89][90]…”

“…Most frameworks had been developed using a systematic approach with substantial input from patients or lay people, though approaches used varied considerably. Some groups had used primary qualitative research 50,55-57,81,84 and/or qualitative, thematic or narrative literature review, 5,10,[33][34][35][39][40][41][42]44,47,58,[62][63][64]70,74,76,81,82,85,87 realist review (asking "what works for whom in what circumstances"), 48,79,80 a consensus-building process such as Delphi 34,38,52,58,69 or economic modelling. 71 Other frameworks had been developed in a more pragmatic way by working groups (typically involving lay people, researchers and/or research funders) with extensive consultation but without an in-depth review of the relevant academic literature.…”

“…31,34,53,58,65,72,73,75,77,[80][81][82]85,88,89 Some covered all lay involvement; others were restricted to specific groups such as older people, 61,80 those with a specific clinical condition, 36,59,72,75,84,87 those with or at risk of a genetic condition 72,85 or underserved or marginalized groups. 65,69,76,77,79 Most grey literature frameworks gave limited details of methodology, though one drew on academic sources 91 and two described and referenced a literature review. 46,54 Four papers proposed a "framework of frameworks" taxonomy of approaches to patient and public involvement in research (see Discussion for details).…”

“…This considered contexts (eg, socio-economic, policy, institutional, historical), group dynamics (structural, individual and relational), the nature of the intervention and/or research (eg, cultural fit, partnership synergy, appropriateness of study design) and outcomes (in relation to both individual and community health and the wider system, including capabilities, power relations and "cultural renewal").Two recent frameworks were published from the US Patient-Centered Outcomes Research Institute (PCORI), an arms-length government organization (and leading funder of patient involvement research) whose main goal is ensuring that comparative effectiveness studies address outcomes relevant to patients. One paper described a framework for extending such research with the principles of community-based participatory research, with a view to building relationships with underserved communities 76. This framework emphasizes using assets-based rather than deficit models to assess and extend community capacities and embracing anthropological as well as biomedical perspectives on the causes and management of illness.…”

Multi-site community-engaged quality improvement to inform regional cervical cancer screening implementation and sustainment in rural Sénégal

“…2,3 However, direct individual and community engagement in traditional QI processes is marginal. 4,5 There are, furthermore, a lack of frameworks and approaches for systematically gathering perspectives from the community through a QI process for the purpose of informing higher-level decision making. In addition, in striving for high quality person-centered health care, 6 there are gaps in the understanding of how regional health systems can best be informed by the perspectives of individuals who are confronted daily by challenges at the health service-and community-levels.…”