Objectives: Standardised reporting of patient and public involvement (PPI) in research studies is needed to facilitate learning about how to achieve effective PPI. The aim of this evaluation was to explore the impact of PPI in a large UK study, the Life After Prostate Cancer Diagnosis (LAPCD) study, and to explore the facilitators and challenges experienced.
Design: Mixed methods study using an online survey and semi-structured interviews. Survey and topic guide were informed by systematic review evidence of the impact of PPI and by realist evaluation. Descriptive analysis of survey data and thematic analysis of interview data were conducted. Results are reported using the GRIPP2 reporting guidelines.
Setting: Life After Prostate Cancer Diagnosis (LAPCD) study, a UK-wide patient-reported outcomes study
Participants: User Advisory Group (UAG) members (n=9) and researchers (n=29) from the LAPCD study
Results: Impact was greatest on improving survey design and topic guides for interviews, enhancing clarity of patient facing materials, informing best practice around data collection, and ensuring steering group meetings were grounded in what is important to the patient. Further impacts included ensuring patient focussed dissemination of study findings at conference presentations and in lay summaries.
Facilitating context factors included clear aims, time to contribute, confidence to contribute, and feeling valued and supported by researchers and other UAG members. Facilitating mechanisms included embedding the UAG within the study as a separate work-stream, allocating time and resources to the UAG reflecting the value of input, and putting in place clear communication channels. Hindering factors included time commitment, geographical distance, and lack of standardised feedback mechanisms.
Conclusion: Including PPI as an integral component of the LAPCD study and providing the right context and mechanisms for involving the UAG helped maximise the programme’s effectiveness and impact.
Butcher, HughKeenan, JohnCatton, DarrylWatson, Eila
Wright, PennyGavin, AnnaGlaser, Adam W.
Department of Nursing
Year of publication: 2022Date of RADAR deposit: 2022-10-04