Impact of patient and public (PPI) involvement in the Life After Prostate Cancer Diagnosis (LAPCD) study: a mixed-methods study

Abstract

ObjectivesStandardised 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.DesignMixed-methods study using an online survey and semistructured 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 (Guidance for Reporting Involvement of Patients and the Public, Version 2) reporting guidelines.SettingLAPCD study, a UK-wide patient-reported outcome study.ParticipantsUser Advisory Group (UAG) members (n=9) and researchers (n=29) from the LAPCD study.ResultsImpact was greatest on improving survey design and topic guides for interviews, enhancing clarity of patient-facing materials, informing best practices around data collection and ensuring steering group meetings were grounded in what is important to the patient. Further impacts included ensuring patient-focused 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 workstream, 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.ConclusionIncluding 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.

Intervention Research and Support Systems for People Affected by Cancer and Their Families: Results of a Descriptive Analysis<br/><br/>Recherche interventionnelle et dispositifs de soutien aux personnes touchées par un cancer et leur entourage : résultats d’une analyse descriptive

“…Un tiers des projets présentent une double implication dans le processus de recherche : professionnels de santé et patients/entourage. La littérature scientifique a clairement mis en avant les impacts positifs de l'implication, et notamment celle des patients dans le processus de recherche [17]. Plus spécifiquement, l'impact a été démontré lors de la construction des projets de recherche-en s'appuyant sur les réels besoins des patients, ainsi que dans l'élaboration de documents d'information à leur destination ainsi que dans l'efficacité des interventions déployées [17].…”