Abstract P5-09-11: Hear my voice: Preparing women with metastatic breast cancer for community engagement
Authors: Ormerod CL , Fawzy Morales JL , Guglielmino J , Hanson AA , Creme Henry CM 
Published: May 2016

Background:

Findings from the Metastatic Breast Cancer Alliance's 2014 Landscape Analysis indicate that women living with metastatic breast cancer (MBC) face challenges in accessing needed education and support resources, feel isolated from the wider breast cancer community, and encounter public misconceptions about the diagnosis, its causes and its ability to be treated.

To address these areas of need, Living Beyond Breast Cancer (LBBC) created the Hear My Voice: Metastatic Breast Cancer Outreach Volunteer training program to provide intensive training to a small group of women living with MBC. Program goals for participants included:

• to become leaders in their physical and digital MBC communities

• to connect themselves and others to MBC resources

• to raise public awareness about the realities of the MBC

Methods:

LBBC launched online recruitment in conjunction with its Annual Conference for Women Living With Metastatic Breast Cancer. More than 80 women applied for 25 seats. LBBC provided financial assistance to offset travel and lodging costs for participants. During an intensive 1-day training, facilitators shared information about the current landscape of MBC information, research, and psychosocial needs. Participants learned about the spectrum of advocacy and public speaking. They began identifying areas of advocacy and practiced sharing their stories. Following the training, the conference provided medical and quality-of -life information and allowed for additional networking and brainstorming.

Results:

The 3-day program enrolled 31 women from 18 states. Of participants, 26% were women of color; 15% lived in rural areas, 29% were diagnosed with de novo metastatic breast cancer, and 71% were diagnosed before age 45 (age range: 24 -68). Participants connected with others who could relate to their unique diagnosis and treatment situation and brainstormed ideas to begin addressing gaps in services, information, and support. Participants commit to two outreach projects in either their physical or digital communities, help LBBC plan for and lead an MBC awareness day across social media platforms on September 21, 2015, and participate in monthly conference calls through December 2015.

Since the training, participants have applied for positions on research review committees, launched blogs, testified before government bodies, collaborated with local nonprofits and health systems to improve their inclusion of MBC needs, participated in training as peer support mentors, and shared vital resources with their healthcare providers and peers. Participants continue to advise and support one another through a closed Facebook group where they share outreach ideas as well as health status, treatment, and well-being updates.

Conclusions:

Providing a physical and digital workspace and a shared goal for a small group whose diagnosis often marginalizes them creates a supportive atmosphere that allows participants to explore ideas and interests and create initiatives that have an immediate impact in their home and online communities. National nonprofit organizations can effect change in discrete and diverse communities by empowering women living with MBC to identify gaps in services, information, and support and begin addressing them with guidance from their national partner.

Citation Format: Ormerod CL, Fawzy Morales JL, Guglielmino J, Hanson AA, Creme Henry CM. Hear my voice: Preparing women with metastatic breast cancer for community engagement. [abstract]. In: Proceedings of the Thirty-Eighth Annual CTRC-AACR San Antonio Breast Cancer Symposium: 2015 Dec 8-12; San Antonio, TX. Philadelphia (PA): AACR; Cancer Res 2016;76(4 Suppl):Abstract nr P5-09-11.