Abstract P1-16-01: Susan G. Komen advocates in science (AIS): Bringing patients’ perspectives to research
Authors: Meyn Anne , Dornan Wayne , Jernigan Cheryl , Johnson-Thompson Marian , Seago-Coyle Rebecca , Segarra-Vazquez Barbara , Spivey Sandra , Weinreb Meryl , Finestone Sandra 
Published: March 2020

Susan G. Komen® is committed to ensure the unique, valuable perspectives of breast cancer patients, survivors, and co-survivors are integrated into scientific discussions and decisions impacting Komen’s progress toward ending breast cancer. Advocates in Science (AIS) was formed to build a cadre of skilled, knowledgeable and broadly-networked breast cancer research advocates; and engage them throughout the research process. AIS members provide real-world understanding of what matters to patients and a sense of urgency to find better solutions to prevent, diagnose, treat, and cure breast cancer. AIS, led by an AIS Steering Committee, is a multi-pronged approach to research advocacy:

• A Diverse & Engaged Membership: The latest survey was sent to 230 members. 146 (65%) completed it. AIS has a wide range of research advocacy experience. This latest survey showed a shift toward more experienced advocates. AIS members with metastatic disease increased 1.5%; co-survivors (friend & family caregivers) increased 5%; and younger members increased 6.4%. AIS had a slight increase in diversity: 6.7% African American; 0.8% Asian; and 2.1% Hispanic.

• Ongoing Education & Training: Komen is committed to developing the next generation of breast cancer research advocates and strengthening the skills and knowledge of all AIS members. AIS provides opportunities for advocates to learn more about research and strengthen their research advocacy skills through a variety of educational sessions and rigorous training programs. New resources are developed based on members’ suggestions and offer varied formats: online tools, webinars, face-to-face meetings, and peer-to-peer mentoring.

• Networking & Communications: The AIS Update (email) keeps advocates current on recent scientific advances in breast cancer, Komen’s research and its impact, and upcoming education and involvement opportunities for advocates. The Voice offers member-to-member highlights from advocate activities. The AIS Facebook page offers networking and member-to-member sharing.

• Involvement in Komen’s Research Grant Strategy and Peer Review: Through AIS, Komen seeks to match advocates to Komen activities best fitting their training, experience and preference. Some advocates serve on advisory boards, providing strategic guidance and input on Komen’s research grant focus. Many others serve as research grant reviewers.

• Engagement in Komen-funded Research Projects: Advocate involvement is required in most Komen-funded grants. AIS together with researchers created a toolkit of resources to enable productive advocate researcher relationships. It includes resources and training for researchers to spur greater understanding of the value advocates can bring to their research and how to effectively engage them on their team. AIS assists researchers in identifying AIS members to work with researchers.

AIS members bring patients’ insights and wisdom to research from bench to bedside to curbside and back. Many AIS members are active in their communities, serving as bridges connecting advocates, scientists and Komen Affiliates. Their efforts foster greater understanding, excitement and support for research and its funding; build stronger researcher community connections; and energize hope for better answers and cures.

Citation Format: Anne Meyn, Wayne Dornan, Cheryl Jernigan, Marian Johnson-Thompson, Rebecca Seago-Coyle, Barbara Segarra-Vazquez, Sandra Spivey, Meryl Weinreb, Sandra Finestone. Susan G. Komen advocates in science (AIS): Bringing patients’ perspectives to research [abstract]. In: Proceedings of the 2019 San Antonio Breast Cancer Symposium; 2019 Dec 10-14; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2020;80(4 Suppl):Abstract nr P1-16-01.