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Patient and Public Involvement in Pressure Ulcer Research

The way we work has been developed collaboratively by service users, carers and staff. We have a partnership agreement which sets out our shared values and how we want to work together. A Public Involvement and Engagement (PPIE) lead supports both PURSUN members and researchers who collaborate with group. We have an induction process where new members can discuss their individual support needs. The PPIE lead also helps researchers to plan and facilitate activities and communicate clearly. We use an asset-based approach, meaning we aim to build on the interests, skills and experience of our members. Flexibility is also important. We do not expect all members to take part in all activities. We work with people to find the level of involvement which is right for them. We also strive to adapt research activities to make them engaging and accessible.

Examples of our Work
Over the years, PURSUN members have supported many projects, influencing pressure ulcer research and practice. Examples include:

  • Developing research ideas – PURSUN members contributed to the James Lind Alliance Pressure Ulcer Partnership, developing pressure ulcer prevention research priorities. They also secured funding for the Pressure Ulcer Prevention at Home PUP@Home project (more info below).
  • Designing research – PURSUN Members have contributed to the design of many studies, ensuring that research is carried out in an ethical and respectful way, which limits participant burden. The PRESSURE 2 study (a pressure ulcer prevention trial) is one example of that.
  • Intervention development – members played a pivotal role in designing the PURPOSE T pressure ulcer risk assessment tool, which is now widely used within the NHS.
  • Helping to make sense of data – For example, this arts-based workshop that was part of the PURPOSE research programme.
  • Teaching and professional development – PURSUN members have shared their experiences at many events, speaking to students, health professionals and researchers. For example, during an ‘experts by experience’ session at the 2023 European Pressure Ulcer Advisory Panel (EPUAP) conference.
  • Sharing research findings – We have developed techniques to support inclusive involvement in dissemination, including interview style presentations, role play and co-authorship (for example, this article in the nursing times).

In 2022, we secured funding for our first fully participatory (user-led) project – The Pressure Ulcer Prevention at Home Study (PUP@Home). The idea for PUP@Home came directly from service users and carers, who are now involved in or leading all aspects of the project, including designing the study, doing interviews, and analysing data. PUP@Home is an extremely collaborative project with input from service users, carers, academics, health and social care professionals and charity partners.
“It’s completely different, it’s very much our project. We own it. We’ve learnt so much” PURSUN member
“We feel empowered by it, we really feel like we own it, and that’s empowering” PURSUN member

Our learning about PPIE
PURSUN is an example of how PPIE can develop over a portfolio of work. Taking time to build relationships is incredibly important and a step which is sometimes neglected in PPIE. We have built trust between the University and PURSUN members over time, culminating in our first fully participatory project. This case study also demonstrates the importance ongoing support and capacity development (for both public contributors and staff) and of flexibility, particularly when engaging with a group who bring complex health needs.

A huge thank you to PURSUN members (past and present) for their time, insights, and dedication.

For more information about this work, please contact Delia Muir