Public and Patient Involvement (PPI) bench to bedside: developing a PPI model across multiple areas of research

Cleary K1, Nelson A2, Fitzgibbon J1, Seddon K1
1Wales Cancer Research Centre, Cardiff University, 2Marie Curie Palliative Care Research Centre, Cardiff

Background:

The Wales Cancer Research Centre (WCRC) is funded by the Welsh Government and covers the wide breadth of cancer research. Public and patient involvement (PPI) is an integral component of the WCRC and is considered to be the ‘golden thread’, woven into the centre’s work.

Objective:

We wanted to develop a model of PPI that is easily replicable in other research groups and organisations.

Method:

We undertook a scoping exercise to identify areas of strengths and any obstacles. From this we tailored support and embedded PPI across the centre including all levels of the governance structure. Alongside an Academic Lead, Lay Lead and Project Officer, we recruited eight members of the public who quickly became valued team members. A PPI Group was formed, which includes all eight public members, and meets quarterly to share best practice and steer the work. We have produced a suite of documents to support and structure our work including a Policy, Terms of Reference and a Partnership agreement clarifying the reasonable mutual expectations between the researchers and public members involved in their work. We have also published an annual report including case studies written by the members of public with whom we work to give a clearer narrative of our work. Public contributors work on projects with researchers and also identify new areas that they would wish to develop.

Results:

We have been highly commended in our approach to building a solid framework for PPI. The success of our model has been helped in part by the enthusiasm and support from the researchers and from all levels within the centre. We are now approached by other research organisations for advice on how to implement PPI within their work.

Conclusion:

Working closely with our external partners and colleagues, we have developed a robust PPI model that supports the wide range of work carried out and, at the same time, is flexible enough to be adapted to other centre’s structures.

Patient or healthcare consumer involvement:

We encourage the members of the public involved in our work to identify and develop areas of interest. One current area looking at how to ensure members of the public recruited as participants in research receive feedback about the project’s conclusions; this topic was proposed by one of our public contributors, who is now working with our researchers on how to explore this issue further.