Count Me In Amplifying Black Voices Across Cancer shares experiences of Black cancer patients, caregivers, and advocates.
Digital initiative launches to elevate Black voices in cancer
Monisha Parker was diagnosed with stage 2B breast cancer in 2014 when she was just 28. Growing up, she’d watched the women in her family battle the same type of cancer. Her mother is a two-time survivor; she lost her grandmother in 2012.
Parker began chemotherapy immediately. Partway through her treatment, Parker’s oncologist scheduled an oophorectomy, a procedure to remove her ovaries, where tumors often spread in patients with this type of cancer. Parker was caught off-guard. She wanted more children, but her doctors had never discussed her fertility options with her. Years later, she realized other patients had a different experience.
“I facilitated a cancer survivor support group for mothers just a few months ago. I was the only Black woman in the group. And when we started talking about fertility, people diagnosed at my age were saying that their doctors had come to them with fertility options first thing. That wasn't my experience,” said Parker, who is a communications manager at a law firm in Raleigh, North Carolina. “I had to do a lot of self-advocating and my own research on fertility options. I felt like my voice wasn’t heard. Now I want to empower others to share their stories.”
Parker opted to delay the surgery, went on to have a third child, and has been in remission for six years. She is a sister, a wife, and now, a cancer patient care activist. She is lending her story to the Count Me In Amplifying Black Voices Across Cancer project, or Voices for short: a digital initiative that launched today and highlights the experiences of Black cancer patients, caregivers, and loved ones affected by cancer, through written stories and video. The goal of Voices is to feature the lived experiences and disparities that exist for marginalized people across the cancer space, amplifying voices that are typically not heard. They hope to increase the representation of Black cancer patients in clinical research, which could lead to the development of better cancer treatments for Black patients.
Count Me In (CMI) is a nonprofit organization affiliated with the Broad Institute of MIT and Harvard, the Dana-Farber Cancer Institute, and Harvard Medical School. CMI partners with cancer patients, clinicians, and researchers to accelerate research. Cancer patients donate their genetic data, biological samples, medical records, and health information to CMI, which then shares that de-identified data openly with scientists to spur research on new and better ways to treat cancer. CMI partners with patients and anyone affected by cancer to also help share their stories and personal histories.
“What we do at Count Me In is to go to patients and community members first because they are the experts of their own disease. We want to build something that’s reflective of the community,” said Colleen Nguyen, a member of the CMI community engagement team, “On the research side, we want to develop vast, rich databases that will accelerate the pace of cancer research.”
Racial disparities in health and healthcare are widespread. Black patients are more likely to be diagnosed with common types of cancers such as breast and prostate cancer. Although the rate of new cancer cases is similar among Black and white people, Black cancer patients face higher levels of cancer-related mortality. One of the contributing factors is that Black cancer patients make up only 5 percent of clinical trial participants, which has led to disparities in the applicability of research results and the efficacy of some cancer drugs.
The underrepresentation of Black patients in research studies can be attributed partly to distrust in medical research within the Black community. “There's a history of mistrust in the African-American community when it comes to the medical community. When you think of historical injustices like the Tuskegee experiments and many other examples, there’s a lot of mistrust built up there,” said Parker.
The Voices initiative is just one step towards rebuilding that trust. Through this initiative and other activities, CMI aims to make meaningful connections with Black patients, prioritize patient relationships and needs, and change the top-down nature of clinical research by engaging with patients first. This includes changing the norms of how patient data are collected and ensuring that those affected by cancer have agency in how their medical data and stories are shared. CMI is also hosting town halls with Black patients, clinicians, and researchers, with the goal of engaging all members of this community in a conversation about the needs of the Black cancer community.
“We think of ourselves as a part of the truth and reconciliation that needs to happen before any of that trust can be rebuilt,” said Nguyen. “We prioritize building personal relationships and reaching out. It might be as simple as sending out a text or call, just really connecting as human beings. And we hold ourselves accountable through transparency.”
The CMI team also hopes to change how the medical community sees patients, particularly patients of color, and encourage researchers to be more attuned to their needs.
“We want researchers to understand that, yes, disparities exist, but that researchers often perpetuate that existence. If we want more diversity in cancer research and equity in cancer treatment, we need to change how research is conducted and whose stories are amplified at the table. Research cannot solely focus on quantitative data; it needs to expand itself to gather the qualitative attributes of a community and elevate the lived experiences of diverse people. Our patients and participants are not number figures; they have their backstories, priorities, and needs,” said Christina Arecy, a member of the CMI community engagement team.
Parker hopes projects like Voices will help close the divide between the Black community and the medical research community.
“I think that Count Me In Voices is a start. It makes people feel more comfortable sharing their stories and it makes the patients feel empowered. It’s important to genuinely want to know how we feel and what's important to the patient,” Parker said. “So many people just in the breast cancer community alone don't feel like their voices are heard. It’s really important to talk to the person before you can really dig down into the patient aspect of it.”