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.
Highlights
Public involvement in research (PI) is defined as research that is “carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.”[1]
These issues and recommendations related to themes of communication; roles and responsibilities; and resources, which are commonly reported as being problematic in public involvement in research (PI) studies, providing relevant guidance that is applicable to a range of health and social research
Other resources that our study suggested should be planned and budgeted for include: additional meeting time so that more technical topics can be discussed separate from core PI meetings; administrative support for summarizing key documents, and writing covering letters to accompany them; time for the negotiation of roles and communication strategies; and buying items of stationary to help community representatives to contribute to discussions and organize study materials
Summary
Public involvement in research (PI) is defined as research that is “carried out ‘with’ or ‘by’ members of the public rather than ‘to’, ‘about’ or ‘for’ them.”[1]. Various guidelines exist that provide advice to researchers on how to conduct effective PI These include a comprehensive set of briefing notes from the national advisory group on service user involvement “INVOLVE,”[1] as well as a “how-to” guide for health and biomedical researchers.[4] These resources are supplemented by specific insights that have emerged from reflective exercises undertaken by researchers and members of the public on the PI practices that they have experienced. A reflective report by academics and patients working together in rheumatology research[5] revealed specific examples of typical academic working practices that could hinder effective communication in PI projects These included the chance “corridor” meetings in the workplace from which members of the public are excluded, as well as the pace and last-minute nature that is typical of academic decision making. An ethnographic study of three health-focused PI case studies reported how opportunities for less formal discussion between team members (such as phone calls and shared travel time) can be useful for enabling public members of the team to contribute their thoughts outside of structured meetings.[6]
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