Evaluating the impact of patient and public involvement (PPI) in the life after prostate cancer diagnosis study (LAPCD)

Background. While the PPI evidence base has expanded significantly over the last decade, the reporting of PPI impact has often been inconsistent and partial. Inconsistent reporting creates a fragmented evidence base making it difficult to draw together our collective understanding of what works, for whom, why and in what context. We set out to evaluate and report a novel method of PPI in a large national study in the UK exploring life after a prostate cancer diagnosis, where PPI was integrated into the study as an independent work-stream. Aim. To evaluate the impact of patient and public involvement in the life after prostate cancer diagnosis study. Methods. A link to an online survey was emailed to all members of the research team (n=38), including researchers, service users, in 2018 at the end of this 3 year study. Semi-structured interviews were conducted with 16 members of the research team. Survey results were reported using descriptive statistics and interviews were analysed with thematic analysis using the framework approach. Results were reported using the GRIPP2 guidelines. Results. Embedding PPI into the study as an independent work-stream was identified as a particular strength, and benefitted from effective organisation and leadership. Research team members recognised that a supportive environment that valued PPI was fostered which helped sustain engagement. Case studies of PPI methods used that showed impact on the study are reported. Conclusion. Providing PPI as an independent funded work-stream helped provide the contextual and process factors important to enable service users to have a real impact on the LAPCD study

Evaluating the impact of patient and public involvement (PPI) in the Life After Prostate Cancer Diagnosis (LAPCD) study

Background. Insights from patient and public involvement (PPI) can help researchers understand what it is like to live with cancer, and thus make cancer research more relevant to the needs of service users (patients and carers). Evaluation and reporting of PPI in health studies is important to build a strong evidence base concerning what works for whom and in what circumstances. We evaluated the impact of PPI in a large national study in the UK exploring Life After Prostate Cancer Diagnosis (LAPCD). Methods. An online survey was mailed to all researchers and service users (N=38) in 2018 at the end of this three year study, followed by semi-structured interviews (n=30). Analysis of survey and interview data was informed by realist evaluation principles. Results were reported using the GRIPP2 guidelines. Results. Strong contextual factors and robust processes for PPI facilitated positive impacts on the LAPCD study. Contextual factors included strong leadership of the service user group, commitment and expertise of the service users, clear roles, a positive attitude to involvement from researchers, and sufficient funding for PPI. Processes included a strong collaboration between the service users and the other research team members developed by embedding the PPI into a work-stream that ran alongside all the other 5 work-streams in the study. PPI impacts are reported on the design of the study, sense checking of patient information, at team meetings, analysis of qualitative data, paper writing, developing lay summaries, and dissemination of results. The study size and geographical distance sometimes created challenges for both service users and researchers. More formal feedback channels were suggested for future PPI. Conclusion. Well-resourced, carefully planned PPI ensured effective involvement and positive impacts on the LAPCD study

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

tle:3ba9967b-34fb-4fca-955e-5a240064aa17:afee126f-04b2-41a9-a6dd-b29b7c6c20ab:1Objectives: 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