Experiences of patients and public partners in codesign of Lynch Choices™: an evaluation study using the Patient Engagement In Research Scale (PEIRS-22)

Patient and public involvement and engagement (PPIE) in health research aims to make research more relevant, clear and useful to deliver results that matter most to people. PPIE can be valuable but it is not always easy. It is not yet part of every project. This paper shares a case study and review of PPIE in the Lynch Choices™ (https://canchoose.org.uk) co-design project. It adds to the evidence on good practice for PPIE in research. Patient Panel members and community partners completed the Patient Engagement in Research Scale (PEIRS-22). This short survey asked about practical arrangements, ease of taking part, contributions, teamwork, support, feeling valued and expected benefits. Each question was scored on a 5-point scale. We calculated scores for each person and the group. People also wrote personal stories about their experience. A researcher did the same. These stories gave deeper insight into feelings, ideas and experiences the survey might miss. They explained why people felt as they did and highlighted areas for improvement. We then looked for key themes in the stories using deductive and some inductive coding. Ten out of 12 Patient Panel members, one Trustee of Lynch Syndrome UK, and one Trustee of Lynch Syndrome Ireland took part (12/14=86% response rate). The average score was 89 out of 100. The middle score was 93 out of 100, above the level called “very meaningful engagement”. Most scores were high in all areas. Quotes from the stories were grouped into seven themes, based on the PEIRS framework. This case study shows how trust, open two-way communication and strong working relationships helped make the Lynch Choices™ project a success. Mostly positive feedback was linked to people feeling valued and part of the team. Building these relationships took time. Contributors said that being part of the project was rewarding, enjoyable and motivating. Most suggested the project outputs would help others in practical and meaningful ways. This study adds to the evidence on PPIE in research, with recommendations for how to improve in future. PPIE should be adequately funded and planned from the start of projects. Two-way learning helps to share benefits with the people the research aims to help. This paper describes patient and public involvement and engagement (PPIE) in research. We partnered with patients, researchers and charities to codesign a decision aid about managing genetic cancer risks, called Lynch Choices. We asked partners to complete a short survey called the Patient Engagement in Research Scale (PEIRS-22), to understand how everyone felt about being involved. The survey measures things like how easy it was to take part and if people felt listened to and part of the team. We also invited people to share personal stories, so we could hear ideas and feelings that the survey might miss. We invited 12 patient panel members and two charity partners to complete the survey. Twelve of them did and shared their stories too. Most feedback was positive. The total PEIRS-22 score was high. People liked clear communication, feeling like part of a true team with researchers, and seeing how their ideas could help others. The personal stories gave extra detail about why being involved mattered and how it boosted confidence and sense of purpose. Some suggestions for improvement were faster payments, more regular updates and involving partners to write papers in their own words. Key lessons learnt from partners were that building trust takes time and keeping honest, two-way communication is essential. We recommend that future researchers include PPIE to really learn from people. They should plan PPIE from the start. They should set aside enough funding and clearly define roles. This will add value to their research and help to share the benefits with the people it aims to help.