Public Involvement in Cancer Research: Collaborative Evaluation Using Photovoice

Area of Science:

• Oncology
• Health Services Research
• Patient and Public Involvement (PPI)

Background:

• Public contributors with cancer experience participated in optimizing diagnostic pathways for suspected cancer patients.
• Involvement spanned project design, analysis, and dissemination alongside research and clinical teams.
• Meaningful public involvement in cancer research requires further understanding of effective practices.

Purpose of the Study:

• To evaluate the public involvement process within two cancer research projects.
• To assess the effectiveness and nature of collaboration between public contributors and research teams.

Main Methods:

• Collaborative evaluation involving research teams and public contributors.
• Photovoice methodology used by public contributors to document their involvement experiences.
• Analysis using a 4-dimensional framework and photo-narrative interpretation to capture contributor perspectives.

Main Results:

• Public contributors reported strong voices and that their feedback was largely implemented.
• Discussions centered on relevant topics, but involvement opportunities were primarily research-team-driven.
• Photovoice narratives illustrated an evolution of contributor confidence and satisfaction.

Conclusions:

• Public contributors can be meaningfully involved throughout cancer research lifecycles.
• Strong relationships and trust are crucial for impactful public involvement.
• Involving public contributors earlier, from the funding stage, can enhance research shaping and diversity of engagement.