Recruiting patients as partners in health research: a qualitative descriptive study

Abstract

Plain English summaryIncreasingly, funders and researchers want to partner with patients in health research, but it can be challenging for researchers to find patient partners. More than taking part in research as participants, patient partners help design, carry out and manage research projects. The goal of this study was to describe ways that patient partners have been recruited by researchers and patient engagement leads (individuals within organizations responsible for promoting and supporting patients as research partners).We talked with researchers and patient engagement leads in Canada and the United Kingdom, as well as a patient representative. We found three ways that could help researchers and patients find each other. One way is a case-by-case basis, where patients are often sought with experience of a health condition that is the focus of the research. The other ways involved directories where projects were posted and could be found by patients and researchers, or a third party matched patients with research projects. We found four recruitment strategies:Social marketingCommunity outreachHealth systemPartnering with other organizations (e.g., advocacy groups) There are many influences on finding, selecting and retaining patient partners: patient characteristics, the local setting, the opportunity, work climate, education and support. We hope study results will provide a useful starting point for research teams in recruiting their patient partners.Abstract Background Patient engagement in clinical trials and other health research continues to gain momentum. While the benefits of patient engagement in research are emerging, relatively little is known about recruiting patients as research partners. The purpose of this study was to describe recruitment strategies and models of recruiting patients as partners in health research. Methods Qualitative descriptive study. Thirteen patient engagement leads and health researchers from Canada and the United Kingdom, as well as one patient representative from a national patient organization (7 female) completed semi-structured interviews. Results Recruitment infrastructures available to respondents varied, but could be categorized into three models including the traditional, third-party and directory models. Four categories of recruitment strategies were identified, representing multiple ways of recruiting patient partners: social marketing recruitment, community outreach recruitment, health system recruitment, and partnering recruitment. Conclusions Multiple recruitment strategies were identified for engaging patient partners in research, and some common factors influenced recruitment. Study findings contribute to the evidence base in patient engagement and provide guidance for research teams to help identify potential recruitment methods for their patient partners.

Mapping Stakeholder Perspectives on Engagement in Concussion Research to Theory

“…33 Moreover, stakeholders need to feel they are important members of the research team in order to sustain their engagement. 13 The need for trust and support can be achieved through face-to-face meetings, and making time to socialize with others on the team has been suggested in studies of generic stakeholders 13,[30][31][32][33] and is congruent with our second study theme, "build connections". The third enabler theme "offer financial assistance" is thought by some to be key to engagement.…”

“…For example, lack of time for engaging in research was described by many respondents as the greatest barriers to SER, a finding reported in other studies no doubt due to the universal application. [28][29][30][31][32] Culturo-linguistic tensions we defined as the lack of recognition of Indigenous "ways of knowing". In contrast, other authors referred to cultural barriers as a "power imbalance" between researchers and participants with SER sometimes viewed as acts of tokenism.…”

The Role of Patient Advisory Councils in Health Research: Lessons From Two Provincial Councils in Canada

“…AB is working toward an electronic communication platform that allows interaction between patients and researchers and serves as a tool to recruit new council members. Ultimately, a mix of recruitment strategies is observed and necessary for the ongoing recruitment of patients (21). Members from both PACs described a wide range of involvement, spanning all stages of the health research process (Tables 1 and 2).…”

Epidemiology research to foster improvement in chronic kidney disease care

“…[112][113][114][115][116][117] Global initiatives are ongoing to reduce barriers to patient involvement in epidemiology research, such as patient uncertainty over their role in study design and guideline development and concerns from the academic community. 116,118,119 In Australia, the Standardized Outcomes in Nephrology initiative outlined practical steps to systematically implement consumer engagement in the management and research of kidney disease and to establish a set of core outcome measures on the basis of the shared priorities of patients, caregivers, clinicians, researchers, and policymakers. 113,120 In Canada, the New Investigators in the Kidney Research Scientist Core Education and National Training Program engages patients in research to improve kidney disease outcomes and to promote the use of patient-reported outcome measures in kidney practice.…”