Toward more mindful reporting of patient and public involvement in healthcare

Understanding of the value of patient and public involvement in research has grown in recent years, but so too has uncertainty about how best to practice and how best to report such involvement in research outputs. One way proposed to report such involvement is through checklists, such as the GRIPP2, which aims to improve quality, transparency, and consistency in such reporting. We critique the unproblematised use of such a tool because of two main concerns. First, being asked to complete a GRIPP2 for a recent publication felt divisive given that the service user researcher was as much a member of the authorship team as the other researchers (whose involvement did not necessitate a checklist). Second, checklists do not actually address the power imbalances and tokenism that is rife in patient and public involvement in research. Indeed, the false sense of objectivity fostered by meeting the minimum requirements of the checklist means that researchers may not go further to engage in reflexive research practices and reporting. Rather than rote use of such checklists, we recommend mindful reflexive reporting in research outputs of patient and public involvement processes. We also recommend future iterations of the GRIPP consider (a) incorporating criteria about whether the checklist is completed by or with service user researchers or not, (b) addressing criteria that position service user research as needing to be justified, and (c) expanding the “critical perspective” element of the checklist to explicitly consider power differentials.

Community coercion in mental health: where to for service-user-led research?

Service-user research is increasingly important in health and social care in some countries but is relatively or completely undeveloped elsewhere. This chapter begins with a brief overview of the development of service-user research in the field of mental health. A definition of what is and isn’t service-user research is provided and common misconceptions challenged; its benefits are described alongside any potential disadvantages. Service-user research in mental health care is outlined and the evidence in relation to coercion in psychiatry reviewed. Much of the evidence relates to experience of institutional environments but has clear relevance for community service providers and recipients too. The small body of evidence relating to community coercion is reviewed in detail. The current state of evidence and ongoing research in this field is summarized and the ways in which service-user research can be developed in the future are discussed.

Developing and evaluating guidelines for patient and public involvement (PPI) in research

Purpose – A growing literature reports the benefits and challenges of patient and public involvement (PPI) in research; nevertheless, understanding PPI in research design remains under-developed. The purpose of this paper is to report learning experiences from involving service users as research partners in two projects that developed and evaluated guidelines for good practice in this regard. The main objective was to evaluate these guidelines. Design/methodology/approach – PPI research guidelines were developed through five workshops involving service users/patients, carers, health and social care professionals/managers and academics. Using a participatory qualitative approach, these guidelines were evaluated through mapping them against the two service user research partners’ experience within another project. Findings – The guidelines were found to be fit for purpose, as they allowed problems to be easily identified and reassurance that required standards were being met. Both academic and service user research partners learned and gained relevant skills. Two service user research partners also found their daily living skills unexpectedly enhanced by project participation. Originality/value – The PPI guidelines, the authors developed were produced by consensus involving several stakeholders. Service users involved as research partners in the project experienced unanticipated personal benefits.

Activity and views of service users involved in mental health research: UK survey

BackgroundOptimisation of the process and outcomes of service user involvement in research is dependent on understanding current practice, challenges and opportunities.AimsTo describe activities, roles and experiences of service users involved in mental health research.MethodNational cross-sectional online questionnaire survey, using snowball sampling. Descriptive statistics and framework analysis undertaken collaboratively with a service user reference group.ResultsThe survey revealed a previously undescribed, highly qualified service user research workforce. Positioned within and alongside mainstream research, respondents reported drawing on extensive service use, and passion for service improvement to challenge perceived clinical academic dominance of research. The support of peers was crucial to involvement, which typically enhanced mental health but for some, pervasive stigma and scrutiny undermined self-confidence and practical difficulties challenged equitable participation.ConclusionsRecognition of the service user research workforce will support the constructive amalgamation of academic and experiential expertise needed to shape and realise investment in mental health research.