JMIR Publications

ABSTRACT

Background:

A public involvement group consisting of four lay members of the public with lived experience of cancer diagnosis contributed to two cancer research projects that focused on optimising the diagnostic pathways for patients with suspected cancer. The public contributors have been involved from the start of the projects and were involved in aspects of the design, analysis and dissemination alongside research and clinical teams. Despite public involvement in cancer research being seen as a key element of the research process, there is still a limited understanding of what works well and how to do it in a meaningful way for both researchers and public contributors.

Objective:

To evaluate the public involvement process in two cancer research projects.

Methods:

This was a collaborative evaluation with the research team and public contributors jointly evaluating the process. Data was collected throughout the lifespan of the project by public contributors through photovoice. In the end, public contributors reflected on their experiences using the four-dimensional framework as developed by Gibson and colleagues.

Results:

Public contributors chose seven photos from the photovoice to present their experience of involvement in these projects. Results from the four-dimensional framework showed that public contributors felt that their voices were strong, and the research and clinical team mostly implemented suggested changes. The discussion focussed on topics and issues that were relevant to public contributors. However, how public contributors were involved depended mainly on the research team's decision, and they would have preferred more opportunities.

Conclusions:

The paper demonstrated how to actively and meaningfully involve people with lived experience of cancer in research. It identified what worked well and key lessons for future cancer projects. These included involving public contributors as early as the funding application stage to offer more opportunities to shape research and offering diverse involvement opportunities at each stage of the research process.