Abstract
BackgroundThe way we collect and use patient experience data is vital to optimise the quality and safety of health services. Yet, some patients and carers do not give feedback 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.MethodsEight 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 at the start of the study. Slide sets were used to trigger co-design discussions with staff, patient and carer research participants, and PPIE contributors. Feedback from PPIE contributors alongside verbatim quotes from staff, patient and carer research participants is presented in relation to the themes from the research data.ResultsPPIE 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 study.ConclusionsOur 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, putting patients and carers at the heart of improving NHS services, and a shared approach to managing involvement in co-design, with the effects shown through the research process, outcomes and the partnership. We reflect on how we worked together to create a supportive environment when unforeseen challenges emerged (such as, sudden bereavement).
Highlights
The way we collect and use patient experience data is vital to optimise the quality and safety of health services
The way we collect and use patient experience data is important because of concern that patients and carers may be excluded by the limited ways it is currently done in NHS services
We worked in partnership with researchers, staff, patient and carer participants, and patient and public involvement and engagement contributors, to co-design new tools for the collection, analysis and presentation of patient experience data
Summary
The way we collect and use patient experience data is vital to optimise the quality and safety of health services. 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. Co-production is one approach of obtaining multiple perspectives and sharing views, reflection, learning, from the start to the end of the research [20,21,22] This approach is rooted in participatory research, enabling people to become involved in the shaping, design and testing of new healthcare interventions that are patient-centred [23]. PPIE in co-design is context dependent [32, 33] and it is important to outline the approach taken in the co-design of an intervention
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