CN62 - Patient and public involvement in cancer research: The needs and perceptions of older adults living with and after cancer

Background

Patient and public involvement (PPI) is a movement to involve and engage people affected by research, and members of the public, in the development, conduct and reporting of health and social care research. PPI is a relatively new development in health research and there is relatively limited understanding of the perceptions and needs of older adults affected by cancer to enable meaningful engagement in cancer research. Therefore, this study aims to explore the perceptions of PPI and percieved facilitators and barriers of PPI for older adults living with and after cancer.

Methods

Qualitative semi-structured interviews were conducted with sixteen older adults over the age of sixty-five who were living with or after a diagnosis of cancer. Participants were recruited via an advocacy organization and a regional cancer center in Ireland. During each interview, participants were presented with an outline of PPI activities and were asked to discuss their preferences for PPI, and the issues which they believed could facilitate or prevent their engagement in the PPI process. Interviews were recorded, transcribed, and analysed according to the principles of thematic analysis.

Results

Thematic analysis of the interview data yielded three themes describing the opportunities, barriers, and needs of older adults related to PPI. While participants believed that PPI could enhance the process and outputs of research, personal and systemic barriers to PPI presented limitations for older adults' involvement, including perceived inexperience and lack of knowledge in research, and the ad hoc nature of PPI opportunities. To ensure accessibility and sustainability of PPI, participants highlighted needs related to training, support, and accommodations which considered the impact of acute and late effects of cancer on older adults' capacity to be involved in PPI.

Conclusions

While PPI is becoming integral in research design, this study highlights a variety of potential barriers to older adults' willingness and opportunity to become PPI research partners. Future efforts to integrate PPI in research efforts must be cognisant of the factors which may prevent or discourage older adults' involvement as PPI partners in research.

Clinical trial identification

Editorial acknowledgement

Legal entity responsible for the study

University College Dublin.

Funding

Irish Research Council.

Disclosure

A. Drury: Financial Interests, Personal, Full or part-time Employment: University College Dublin; Financial Interests, Institutional, Research Grant, I am a collaborator on the Pfizer-funded project ABC4Nurses, which is coordinated and managed by EONS: Pfizer; Non-Financial Interests, Invited Speaker: European Oncology Nursing Society; Non-Financial Interests, Advisory Role, I am an advisor on several EONS projects, including ABC4Nurses and RCC & HCC PROMS: European Oncology Nursing Society. All other authors have declared no conflicts of interest.