The benefits of establishing a patient advocate researcher partnership on an international cancer consortium.

Abstract

357 Background: Engaging patient advocates in clinical cancer research is increasing but has been limited in basic cancer research (BCR). Advocate engagement is however required by many grant funding agencies. The advocates participating in CRUK’s, Cancer Grand Challenges team OPTIMISTICC (Opportunity To Investigate the Microbiome's Impact on Science and Treatment In Colorectal Cancer) were interested in exploring how our participation on the team impacted the OPTIMISTICC researchers and their work. OPTIMISTICC is an international collaboration between patient advocates and researchers studying the role of the microbiome in colorectal cancer. The project is divided into six work packages (WP) that include BCR, translational research and clinical trials. Each advocate is embedded within a WP and are contributing members of the team attending monthly team and WP meetings. We have various tasks including the development of tools that have been useful for the team and for outreach to patients, sharing our experiences as a colorectal cancer survivor. Methods: To assess the researcher’s experience working with advocates, we developed a survey that was sent to the team with a completion rate exceeding 50%. The survey included eight questions that identified work package involvement (BCR, translational and/or clinical research), stage of researcher’s career (<5 years or > 5 years), researchers’ previous involvement with advocates, and whether/how the engagement of advocates influenced their research. There was an open-ended question that provided an opportunity for researchers to comment on the impact of the advocates. Results: The survey was completed by 35 researchers. The majority, 57%, do research mainly focused on BCR, 6% focus on translational and 37% on clinical research. Approximately half were early-stage researchers. Over half had not worked with advocates prior to OPTIMISTICC. In terms of impact, 94% indicated that having advocates as active contributors to their research had been helpful and would request advocates on future projects. Researchers commented that we advocates helped focus the research on what benefits patients, making their research more accessible and appealing, enabling them to think about their work and conclusions in new ways. We identified potential obstacles with patient facing materials. The researchers valued our high degree of engagement and the relationships they developed with us. The survey revealed that we are valued partners on the team. Conclusions: OPTIMISTICC is starting the 5th and final year of the grant. The results of the survey demonstrate that engagement of advocates in BCR, translational and clinical research benefits both researchers and advocates, ultimately benefiting patients and the public. We acknowledge that a limitation of the study is the small number of respondents and the unique partnerships that have developed in team OPTIMISTICC.