PPI-POWER-Planning our work with equity and respect: A case study of PPI working

Background: Patient and Public Involvement (PPI) is increasingly advocated for undertaking research that is useful and relevant to those impacted by it. Funding bodies now include PPI as a mandatory part of funding programmes. Although researchers may be open to PPI research, the practicalities of this approach can be unclear. Therefore, we describe how we worked together to identify research priorities on a project called PPI-POWER (Patient and Public Involvement-Planning Our Work with Equity and Respect). Methods: Our team comprises a person with intellectual disability, two parents of people with intellectual disability, a research officer and a researcher. We used a diary study approach to document the strategies we used to ensure everyone was heard and involved, building our partnership, successes, challenges, practicalities. We met approximately every six weeks. At the end of each meeting we talked about how we found preparing for and being part of that meeting. Results: We use the PPI Ignite Network Values and Principles (2022) as a framework to present our experiences. Clear, open communication, transparency around expectations as well as flexibility, respect and understanding regarding responsibilities beyond the research were important issues that were necessary for successful working. Conclusions: Careful, considerate teamworking supports the development of PPI partnerships that will be invaluable and impactful. Although our work relates to people with intellectual disability and their carers, the strategies we used can apply across different groups. Further, we make a number of recommendations that support respectful, collaborative working for those planning PPI research.