Co-designing New Tools for Collecting, Analysing and Presenting Patient Experience Data in NHS Services: Working in Partnership With Patients and Carers

Abstract Background: The way we collect and use patient experience data is vital to optimise the quality and safety of health services. Yet, vulnerable patients and carers may be excluded because of the limited ways data is collected, analysed and presented. In this study, we worked together with researchers, staff, patient and carer participants, and patient and public involvement and engagement (PPIE) contributors to co-design new tools for the collection and use of patient experience data in multiple health settings. This paper outlines how the range of PPIE and research activities enabled the co-design of new tools to collect patient experience data.Methods: Eight public contributors represented a range of relevant patient and carer experiences in specialist services with varied levels of PPIE experience, and eleven members of Patient and Participation Groups (PPGs) from two general practices formed our PPIE group. Slide sets were used to trigger discussions and facilitate co-design with patient and carer research participants. Feedback from PPIE contributors alongside verbatim quotes from staff, patient and carer research participants is presented in relation to the themes from the qualitative research data. Results: PPIE insights from four themes: capturing experience data; adopting digital or non-digital tools; ensuring privacy and confidentiality; and co-design of a suite of new tools with guidance, informed joint decisions on the shaping of the tools and how these were implemented. Our PPIE contributors took different roles during co-design and testing of the new tools, which supported co-production of the research study. Conclusions: Our experiences of developing multiple components of PPIE work for this complex study demonstrates the importance of tailoring PPIE to suit different settings, and to maximise individual strengths and capacity. Our study shows the value of bringing diverse experiences together, and a shared approach to managing involvement in co-design. We reflect on how we managed to work together to create a supportive environment when unforeseen challenges emerged (such as, sudden bereavement).