Embedding patient and public involvement: Managing tacit and explicit expectations

Abstract

Background Evidencing well‐planned and implemented patient and public involvement (PPI) in a research project is increasingly required in funding bids and dissemination activities. There is a tacit expectation that involving people with experience of the condition under study will improve the integrity and quality of the research. This expectation remains largely unproblematized and unchallenged. Objective To critically evaluate the implementation of PPI activity, including co‐research in a programme of research exploring ways to enhance the independence of people with dementia. Design Using critical cases, we make visible and explicate theoretical and moral challenges of PPI. Results Case 1 explores the challenges of undertaking multiple PPI roles in the same study making explicit different responsibilities of being a co‐applicant, PPI advisory member and a co‐researcher. Case 2 explores tensions which arose when working with carer co‐researchers during data collection; here the co‐researcher's wish to offer support and advice to research participants, a moral imperative, was in conflict with assumptions about the role of the objective interviewer. Case 3 defines and examines co‐research data coding and interpretation activities undertaken with people with dementia, reporting the theoretical outputs of the activity and questioning whether this was co‐researcher analysis or PPI validation. Conclusion Patient and public involvement activity can empower individual PPI volunteers and improve relevance and quality of research but it is a complex activity which is socially constructed in flexible ways with variable outcomes. It cannot be assumed to be simple or universal panacea for increasing the relevance and accessibility of research to the public.

Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects

“…This requires the early involvement of PPI partners in the joint development of the research study or program [ 20 ]. The literature notes that during this process, PPI co-applicants and researchers may pursue different agendas than can lead to misunderstandings and conflict [ 21 , 22 ]. In the United Kingdom work has led to the development of an ethical framework for researchers at the early research design stage [ 22 ].…”

Involving research participants in a pan-European research initiative: the EPAD participant panel experience

“…The participant-led nature of the panels created the potential for conflicts between the ambitions of the panel and the realities of what the research staff can deliver. Others have noted the importance of identifying and addressing differences in assumptions between what staff want to achieve and what PPPI members want to achieve [ 37 ]. EPAD panels encouraged open and transparent dialogue during panel set-up and throughout the involvement process, with discussions on what actions could and would or would not be taken, with discussion of the reasons.…”

Journeying through Dementia Randomised Controlled Trial of a Psychosocial Intervention for People Living with Early Dementia: Embedded Qualitative Study with Participants, Carers and Interventionists

“…This was also considered a step to support participant engagement through scaffolding memory for consent for quotation to be used. 27 Transcripts were sent by post to all those interviewed accompanied by a letter providing details of what to do and how to contact the study team should they have any further comment. Two of those interviewed (both facilitators) provided additional comment on their transcripts using annotation and one of these also altered some of the grammar (interviews were transcribed verbatim).…”