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

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). 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. 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. 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. Patient and Public Involvement (PPI) research is about involving people who know about the research topic in the research team. It is an important way of doing research so it will help and matter to people who need the information. Sometimes it is not clear how to do PPI research. This paper presents a real-life example of PPI working on a research team comprising a person with intellectual disability, two parents of people with intellectual disability, a research officer and a researcher. The project is called PPI-POWER which stands for Patient and Public Involvement-Planning Our Work with Equity and Respect. We share our experiences of doing PPI work together and what we did to make it work. We kept a diary or wrote short notes of how we worked together to identify a research goal. In this paper we present what we did using the PPI Ignite Network Values and Principles as a framework. We found a way of working together where we were all respected, included and listened to. We needed to keep communicating with each other so everyone was clear about what to expect or do. We recommend starting a project with PPI partners as a good way of making sure they are heard.