Introduction Involving and engaging the patient and public in research as collaborative partners is essential, from the initial concept through to publication
Aims We will host a conversation with two members of the public about their recent experience of working with researchers to develop a research project and apply for research funding.
Methods We recently worked with two patient and public involvement (PPI) members on two research proposals focused on financial insecurity for people living with terminal illness. Neither have previously been involved in the development of a research project, but both were able to provide invaluable insight through their own experiences. One co-applicant is living with a terminal cancer and has experienced ongoing issues with the Department for Work and Pensions related to his application for the financial benefits he is entitled to. The other co-applicant is a carer of her mother-in-law who has dementia. During the pandemic, her mother-in-law was moved to a care home. It was up to the co-applicant to find and understand possible funding options, as many sources of support (such as the citizens advice bureau) were not open.
Results During this conversation, we will cover topics such as: (1) their experiences (2) why they agreed to get involved in the research proposals (3) how they felt about the process (4) their expectations of being a PPI research partner. We will use the NIHR framework1 to structure this conversation, to discuss PPI involvement throughout the research cycle from the identification of priorities through to monitoring and evaluating.
Conclusions This conversation will enable us to understand why, how, and when members of the public decide to get involved in research.
Impact This conversation will offer a reflection moment for all conference attendees to consider their own use of PPI and how they could better support them in the future.
National Institute for Health Research. 2014. Patient and public involvement in health and social care research: A handbook for researchers. https://www.rds-yh.nihr.ac.uk/wp-content/uploads/2015/01/RDS_PPI-Handbook_2014-v8-FINAL-11.pdf
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