Abstract PO1-17-06: Driving diversity in research participation with ShareForCures™, a patient-centered, nationwide breast cancer research registry to improve outcomes
Authors: Jourquin Jerome , McCoy Stephanie , Segarra Barbara , Marks Emily , McIlwain Carlita Proctor , Kazar Brady , Troester Melissa , Sabelko Kimberly , Bondy Melissa 
Published: May 2024

Background The lack of diversity in research and small and siloed datasets have led to a lack of real-world evidence, limiting our ability to practice precision medicine and optimize treatments and care for all breast cancer patients. Susan G. Komen,® a breast cancer advocacy organization and the largest non-profit breast cancer funder outside the U.S. government, launched ShareForCures™ (SFC), a secure, patient-centered research registry. The registry aims to engage breast cancer survivors from diverse backgrounds as research partners to facilitate sharing of their data to drive innovative breast cancer research and improve outcomes. SFC is IRB-approved and open to any adult living in the U.S. and diagnosed with breast cancer. SFC is designed to be easy to join and accessible online. Participants provide survey information about their diagnosis, quality of life, lifestyle, family history, etc. Some of them will be asked to provide a saliva sample, and their medical records will be retrieved. Methods Patient advocates have driven every aspect of the development of SFC, from serving on its governance council to participating in focus groups and beta-testing the platform build. Most important to the success of the registry was to ensure we worked with community partners to conduct breast cancer survivor focus groups and to solicit views and expectations about patient-centered research engagement. Those focus groups were conducted in 2020 and 2021 in-person (N=4) and virtually (N=8) across the U.S., with three conducted in Spanish. The findings that emerged from the focus groups informed the establishment of SFC, from governance and technology implementation to platform features and processes. For feedback on pre-enrollment information, we invited 432 diverse breast cancer survivors to participate in an audience testing of two versions of a SFC landing page, a flyer, and a social media post. One version was designed to be more technical and the other more inspiring/motivational. Finally, we pilot tested SFC with 56 breast cancer survivors. Those who joined provided feedback through individual debriefing sessions about the onboarding process, consent, the questionnaire (“About You”) and the SFC platform. Results Four main themes emerged from the focus groups (N=64 participants): tailor communications to specific groups of participants, create an environment of trust and transparency, address concerns about data privacy and security, and share news and results. Audience testing on SFC materials revealed the majority liked positive personal messaging, although technical messaging highlighting the science, research, and data was also favorably reviewed. Participants ranked privacy and data security as priority concerns. Of the 56 breast cancer survivors invited to participate in the pilot testing of SFC, 31 fully onboarded, three started but did not complete onboarding, and six declined. To fully onboard, participants had to accept the informed consent and medical records release forms and complete the “About You” questionnaire. They indicated the process and online platform were easy, and the dashboard was an important feature for participants to stay engaged. They also confirmed focus group emphasis on clarity regarding SFC research goals and importance of sharing results. Conclusions All individuals who provided feedback expressed interest in sharing their experiences, inspiring others’ experiences, and accelerating research. They understood that this research may not benefit them directly but that it could benefit others. The results indicate that people are willing to participate in research if asked. Komen’s patient-centered approach of involving patients at all steps of developing SFC fosters trust, transparency and engagement that will enhance SFC’s impact.

Citation Format: Jerome Jourquin, Stephanie McCoy, Barbara Segarra, Emily Marks, Carlita Proctor McIlwain, Brady Kazar, Melissa Troester, Kimberly Sabelko, Melissa Bondy. Driving diversity in research participation with ShareForCures™, a patient-centered, nationwide breast cancer research registry to improve outcomes [abstract]. In: Proceedings of the 2023 San Antonio Breast Cancer Symposium; 2023 Dec 5-9; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2024;84(9 Suppl):Abstract nr PO1-17-06.