Openness, inclusion and transparency in the practice of public involvement in research: A reflective exercise to develop best practice recommendations

Abstract

ContextReflective accounts of public involvement in research (PI) are important for helping researchers plan and deliver more effective PI activities. In particular, there is a need to address power differentials between team members that can prohibit effective and meaningful involvement.ObjectiveTo critically reflect on the PI practices that underpinned our research project on intimacy and sexuality in care homes, to develop a series of recommendations for improving future PI activities.SettingThe research team comprised five academics from nursing, public health, sociology and psychology, and two members of the public with experience of sex education, and lesbian, gay, bisexual and trans issues in older populations. In order to address power differentials within the group, we developed an approach to PI practice that was grounded in values of openness, inclusion and transparency.MethodReflective commentaries on the strengths and weaknesses of the team's approach to PI were gathered through interviews and open‐ended questionnaires with research team members. These views were collated and discussed at a workshop comprising research team members and an additional member of the public to generate recommendations for future PI practice.ResultsA number of strengths and limitations of our approach to PI were identified. Clear recommendations for improving PI practice were developed for three broad areas of identified difficulty: (i) communication within and between meetings; (ii) the roles and responsibilities of team members; and (iii) PI resources and productivity.Discussion and conclusionThese recommendations add to the developing body of guidance for conducting effective PI.

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]…”

“…20,27,36,59,69,78,91 Some groups used a combination of literature review, qualitative research and workshops. 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.…”

“…98 A number of academic-lay partnerships have produced similar frameworks, typically as a result of hybrid funding from academic, service and patient organizations. 31,41,55,[59][60][61]77,79,82,84,85,91 Common themes in this category included governance mecha- Table 3, and the standards are reproduced in full in the Appendix S1.…”

“…Power-focused frameworks were rarely used directly, but they informed and underpinned subsequent work on more applied categories of framework. 46,51,58 Some but not all priority-setting, 46,78,85 study-focused [79][80][81] and partnershipfocused 31,38,55,58,59,61,82,84 frameworks went on to be used by the groups that developed them, but very few had evidence of adoption by other groups. One framework was promoted by the UK Health Technology Assessment programme as "best practice."…”

Reflections and experiences of a co-researcher involved in a renal research study

“…Her reflections are retrospective and based on her overall experience at the end of the project. The impact of involvement is usually measured or evaluated from the researcher perspective [ 26 ] although PPI reflections have also been included [ 24 , 27 , 28 ]. In this paper, the co-researcher critically evaluates the impact of her own involvement.…”