Abstract IA002: Full circle: Return of value to ovarian cancer research participants, advocates, and survivors
Abstract Survival and survivorship research in ovarian cancer has generated vital insights that can significantly impact the lives of people with the disease and their communities. However, there are persistent challenges in ensuring that research findings are effectively disseminated back to the individuals who contribute to and are most affected by this work. In the Multidisciplinary Ovarian Cancer Outcomes Group (MOCOG) study, engagement with patient advocates has highlighted an urgent need for accessible, understandable dissemination materials tailored to the needs of women living with and beyond ovarian cancer. Our advocates have emphasized a key principle: return of value. This concept involves ensuring that participants—whether research subjects or advocates—receive meaningful, actionable information in formats that are accessible to them. Responding to this need, MOCOG is co-designing a suite of lay materials summarizing our study findings, including visual abstracts and short-form audio and video content. This multipronged approach acknowledges diverse preferences and literacy levels within the survivor community, maximizing reach and impact. Input from advocates has driven our development process, from topic selection through to format and distribution channels. Recognizing advocates as integral partners, we have implemented mechanisms for their direct input, such as the creation of advocacy-driven question lists and interactive breakfast round tables with our expert research team. These efforts have catalyzed meaningful dialogue and mutual learning, reinforcing the importance of recognizing advocates as knowledge holders and ensuring the research process is responsive to their priorities. Also, advocates on MOCOG participated in research discussions and papers and were then in a position to advocate for follow-on studies that might help improve survival for women with ovarian cancer. Looking forward, study design processes are increasingly incorporating early-stage feedback from participants and advocates to ensure co-design and return of value are central considerations. This not only fosters trust and engagement but also increases the relevance and uptake of research findings within the survivor community. One example is the patient registry under development by Ovarian Cancer Research Alliance, which is built on the principles of early and continuous community engagement. Our experiences underscore the importance of designing research with return of value in mind, informed by authentic collaboration with those most impacted. As the field evolves, integrating community perspectives through partnerships and emerging platforms will be critical to maximizing the significance and reach of ovarian cancer research. Citation Format: Celeste Leigh Pearce, Gillian Hanley, Anne Chase, Cindy McKinnon. Deurloo, Jean Richardson, Bronwyn Grout. Full circle: Return of value to ovarian cancer research participants, advocates, and survivors [abstract]. In: Proceedings of the AACR Special Conference in Cancer Research: Advances in Ovarian Cancer Research; 2025 Sep 19-21; Denver, CO. Philadelphia (PA): AACR; Cancer Res 2025;85(18_Suppl):Abstract nr IA002.
Authors
- Celeste Leigh Pearce (ORCID: https://orcid.org/0000-0002-8023-7846)
- Bronwyn Grout
- Gillian E. Hanley (ORCID: https://orcid.org/0000-0001-9594-0545)
- Jean L. Richardson (ORCID: https://orcid.org/0000-0002-8273-6518)
- Anne Chase
- Cindy McKinnon Deurloo
Institutions
- University of British Columbia (CA)
- University of Michigan (US)
- Advocate Health Care (US)
- Patient Advocate Foundation (US)
Publication Details
- Journal
- Cancer Research
- Published
- 2025-09-19
- DOI
- https://doi.org/10.1158/1538-7445.ovarian25-ia002
- Primary Topic
- Advances in Oncology and Radiotherapy
- Type
- article
- Field-Weighted Citation Impact
- 0.00