Rosetta Washington and Dawn White-Bracey entered the Center for Community Engagement and Health Equity (CEHE) and Community Alliance for Research and Engagement (CARE) Community Research Fellowship Program at Yale Cancer Center with unknown expectations. Both women were seeking an enrichment opportunity and already had significant experience in community outreach. Thanks in part to their personal journeys with cancer, they brought new, unexpected perspectives, and left an indelible impression on their colleagues.
Launched in 2021, the nine-month fellowship program matches members of the community with one of ten Yale Cancer Center affiliated research groups or ‘host sites.’ The first few months provide training and educational workshops to introduce Community Research Fellows (CRFs) to basic cancer knowledge, patient-centered outcomes research, and community-based participatory research, followed by placement of CRFs into their research groups. The goal of the program is to provide research experience to community members, while developing relationships with Yale Investigators.
Leading in to their fellowships, Rosetta and Dawn both had great skillsets to share with their team. Rosetta, a licensed master social worker (LMSW), spent more than 12 years working with different populations within the Connecticut Departments of Corrections, Labor, and Children and Families. Dawn, a full-time realtor, is also President of Sisters’ Journey, a faith-based support group for breast cancer survivors, their family, and their friends. They were matched with Principal Investigator, Rachel Greenup, MD, MPH, Associate Professor of Surgery (Oncology) and Chief of Breast Surgical Oncology, and National Clinician Scholars Program Research Fellow and general surgery resident, Jasmine Khubchandani, MD. Their study, the “Life After Mastectomy Study,” was designed to explore the lived experiences of women of color with breast cancer that lost a breast due to mastectomy and did not receive reconstruction, particularly as it relates to culture, community, and partnerships.
“There remains persistent racial and ethnic inequity in who gets postmastectomy reconstruction and Asian, Black, and Latina women consistently undergo reconstruction at lower rates compared to white women,” said Dr. Khubchandani. “We have a limited understanding of what life is like for women who have a mastectomy without reconstruction, and we hope our study will give us the information to better prepare women for life after surgery.”
For Rosetta, she readily admits this placement was not her first choice. At almost the same time she was selected for the fellowship, her sister was diagnosed with breast\ cancer, undergoing a double mastectomy and later, full reconstructive surgery. Rosetta was her primary caretaker and naturally this study topic hit close to home. However, she turned her personal experience into a positive.
“My sister actually joined the pilot and helped us fine tune questions, and I used my own experience to tap into as I was interviewing participants,” explained Rosetta. “When they would ask, ‘How do you know about drains?’, I could share how I changed my sister’s drains. It helped me form a connection with them on a personal level, and it helped me understand their experience.”
Breast cancer was also personal to Dawn. Her mother, Linda, passed away in 2003 after a second breast cancer diagnosis. Just four years earlier, Linda had started Sisters’ Journey to build a network of support for women with breast cancer and to encourage women to share their stories and to advocate for themselves and their health. Dawn has served as president for the last 12 years.
Dawn and Rosetta were embedded in the research team and became integral contributors. They met regularly with Drs. Greenup and Khubchandani to help get the project off the ground. Dawn, Rosetta, and Dr. Khubchandani trained to conduct interviews with breast cancer survivors under the guidance of Sakinah Carter Suttiratana, PhD, MPH, MBA, an Associate Research Scientist and Co-Director of CEHE. When it was time to recruit participants, Dawn and Rosetta’s connections to the community helped jumpstart the process.
Currently, Dawn and Rosetta focus their efforts on conducting interviews, but also meet regularly with the analysis team to help evaluate the results from interviews. “We were incredibly lucky to have had Dawn and Rosetta placed with our team,” said Dr. Khubchandani. “At the time that we were first paired together, we were still working on study design and how we were going to bring the voice of the community into the study. Once we connected, the synergy towards that goal was present almost immediately.” “We could never have predicted the extent of the tangible and intangible benefits they brought to our group. We were thrilled to become a host site for the CRF Program, but to be placed with two incredible women with such unique, yet relevant personal experiences, has been a wonderful experience.”
While Dawn and Rosetta completed their official nine month term as CRFs, both agreed to stay on as consultants through June 2023 when Dr. Khubchandani completes her National Clinician Scholars Program Fellowship at Yale. Dr. Khubchandani will return to Massachusetts General Hospital to finish her general surgery residency. Once that concludes, she intends to pursue a one-year Breast Surgical Oncology Fellowship to become a breast surgeon.
“I am the daughter of Indian immigrants and growing up in an ethnically and socioeconomically diverse community in Massachusetts, I was surrounded by people from many different backgrounds. When I started college at a homogenous school, I found all the layers of my identity in the minority,” said Dr. Khubchandani. “I became interested in how cultural identity shapes the way people navigate the world. After college, I found myself in a health policy and health disparities research assistant position. There I saw experts studying inequity in health outcomes for the first time. I realized that my passion for understanding human narrative and cultural identity could be channeled through research and scientific discovery. I entered medical school a year later committed to leveraging research to create a more equitable health care system.”
For Dawn, the fellowship provided valuable exposure to how research studies like this can impact her community. Like her non-profit work, a community-based study can give a voice to populations who may feel they are not heard. “I grew up intimidated by doctors, and we are constantly striving to empower women at Sisters’ Journey to advocate for themselves and break down that invisible barrier between doctor and patient. I’ve been given an opportunity to do amazing work, and I want to be able to share it. I am so proud to have been part of this effort.”
Life has almost come full circle for Rosetta. When the study concludes in June, it will have been one year since her sister completed her breast cancer surgeries. Rosetta says she experiences the world much differently now. She says, “In our group, everyone was passionate about the work for their own reasons, and this experience has been especially rewarding. I have felt very fortunate to have had a seat at the table, both literally and figuratively. To have the opportunity to share my two cents on study question development with doctors and epidemiologists, and to be seated next to Dr. Marcella Nunez-Smith (Director of the Center of Community Engagement and Health Equity) one day at a lunch, hearing how she provides input to The White House and seeing her in that role as a woman of color; it has been a once-in-a-lifetime experience. Personally, this fellowship has led me to start exploring Research Associate openings at Yale.”
A critical takeaway from this research opportunity is how their work bridges the scientific world and the community. Explains Dr. Khubchandani, “I think it’s always important to remember and ask yourself, ‘What are we doing this for?’ We want to ultimately improve health equity and researchers will be able to better do that if they partner with the communities their research impacts. We can’t do it alone.”
“For our CRFs, I want them to continue to bridge the academic world with the local communities and continue to develop their voices. They both brought important perspectives to our research, and I can say I’m a better researcher because of them.”