Partnership fights to amplify Black women’s voice in breast cancer research

By Jenni Spinner

- Last updated on GMT

(FatCamera/iStock via Getty Images Plus)
(FatCamera/iStock via Getty Images Plus)

Related tags Cancer Breast cancer Patient centricity data analysis Data management

The #BlackDataMatters movement aims to improve outcomes for Black women living with breast cancer by increasing their presence in vital clinical research.

Racial disparities in healthcare (detailed in the National Healthcare Quality Disparities Report​ issued by the Agency for Healthcare Research and Quality) run parallel to inequity in clinical research. This inequality can have deadly consequences for the underrepresented groups, particularly when it comes to Black women diagnosed with breast cancer; they are far more likely to get breast cancer, die from it, or suffer a recurrence than white women.

Touch, the Black Breast Cancer Alliance​ is working to help eliminate these inequities in care and research, and to give Black women a fighting chance against the disease. Pitching in is health data company Ciitizen who has partnered with the org to start the #BlackDataMatters in order to encourage women to sign up for trials and pinpoint genetic differences that impact care.

Outsourcing-Pharma connected with two leaders in the effort to discuss the significant disparities in breast cancer, and the importance of working to increase the voice of Black breast cancer patients in research:

  • Ricki Fairley, CEO at Touch, the Black Breast Cancer Alliance
  • Alexa Berk, Head of Research and Real-World Evidence, Ciitizen

OSP: Could you please talk about the growing awareness of racial and gender disparities in healthcare and research, and some of the key reasons why this awareness is important?

RF: Awareness of disparities is critical because of the devastating mortality statistics for Black women:

  • Black women with breast cancer have a 71% higher risk of death than white women (adjusted for age and stage; J Natl Cancer Inst 2017)
  • Black women have a 39% higher recurrence rate than white women (Phase III TAILORx Trial).
  • Black women under 35 get breast cancer at twice the rate and die at three times the rate as white women (ACS).
  • Approximately 19% of breast cancers diagnosed in Black women are triple-negative breast cancer compared to 9% in white women, and Black women with triple-negative breast cancer have a 28% increased risk of death compared with white women (Oncotarget, 2017).

There is a dire need for Black Women to participate in clinical research to bring the necessary science to Black breast cancer. In order to help grow awareness of racial and gender disparities effectively, we must overcome the huge barrier of mistrust based on the harmful scientific history of exploitation and racism by providing tools that give people of color the confidence that their data will be protected and safe.

AB: Unfortunately, health disparities are not a new topic; Martin Luther King stated in 1966, “Of all the forms of inequality, injustice in health is the most shocking and the most inhuman because it often results in physical death​.” Fifty-five years later, we are still living with this dangerous inequity, although certain things have brought the topic into sharper focus recently.

The COVID-19 pandemic disproportionately impacted certain minority groups, which brought the topic of health disparities into the mainstream as an urgent public health matter. In addition, recent technological advancements in data-driven research and real-world evidence have revealed trends and patterns in healthcare outcomes by demographic characteristics, identifying powerful differences in the healthcare experiences of all Americans.

Understanding these disparities is the first step in potentially addressing them - whether that be through patient education, better screening and prevention tools, targeted drug development, or improving access to life-saving treatment.

OSP: Particularly, why is it important to increase equity in care with Black women?

AB: When we talk about health disparities, two of the biggest drivers are differences in genetics and biology as well as the impact of what we call “social determinants of health.” Social determinants of health, as defined by the CDC, are “conditions in the places where people live, learn, work, and play that affect a wide range of health risks and outcomes.”

Unfortunately, we see that Black women, in addition to any potential biological and genetic factors, are oftentimes facing multiple adversities in their social determinants of health - economically, environmentally, and as people facing multiple different forms of bias and injustice. It is this intersectionality of multiple factors that leads to Black women experiencing some of the worst health outcomes across disease areas, which must be addressed comprehensively.

Ricki Fairley, CEO, Touch, the Black Breast Cancer Alliance

RF: Breast cancer in Black women is a distinct disease that deserves special attention and focuses on the breast cancer ecosystem. The physiology of Black women has not been a significant consideration in clinical trial research, and the average participation by Black women in breast cancer clinical trials​ overall is less than 3%. Part of the reluctance to get involved in medical research can be attributed to the fact that nearly one-third of us believe scientists cannot be trusted, compared to 4% of white women.

OSP: Do you think you could speak to some of the apparent disparities in oncology in general, and breast cancer specifically?

RF: Black breast cancer patients die at a 40% higher rate​ than white breast cancer patients, and these devastating mortality numbers will not change until we better understand the physiology of Black women. When they’re not in clinical trials, they miss access to newly emerging and often life-extending treatments not otherwise available. Until there are more Black women included in clinical research, we cannot end these disparities.

AB: There are several cancer types where we see significantly higher incidence and/or mortality in Black patients compared with white, meaning Black men and women are much more likely to get these diseases and disproportionately likely to die from them. For example, prostate cancer incidence is about 60% higher in Black men than it is in white men, with a 2-3 times higher mortality rate.

Similarly, in colorectal cancer, we see Black men and women have a 20% higher incidence rate and a 40% higher mortality rate. Within breast cancer, although Black and white women tend to get breast cancer at relatively similar rates, Black women are 42% more likely to die from breast cancer than their white counterparts. These health disparities are concerning and something that must be urgently addressed by oncology researchers.

OSP: Please tell me about the #BlackDataMatters initiative—how Ricki started it, how Ciitizen contributed, the goals of the movement, and what you’ve accomplished so far.

RF: Starting with black breast cancer, the mission of #BlackDataMatters is to put patients in a position of power to directly change the research and medical system that often fails black patients. This initiative is led by Touch, The Black Breast Cancer Alliance, and Morehouse School of Medicine, which are powered by Ciitizen. Ciitizen makes it easy for patients to be in control of their health data.

Ciitizen collects, digitizes, and organizes their medical records making them research-ready. Through Black Data Matters, Ciitizen creates access to research opportunities for their community. When all of a patient’s medical data is in Ciitizen profile, not only is the data secure/private, but the patient is also then empowered to choose if they want to contribute to life-saving research.

AB: Underrepresentation in research is one of the biggest sources of health disparities, especially in cancer and most specifically in breast cancer. Black women continue to be drastically underrepresented in breast cancer clinical trials, constituting only 3% of the participants in the breast cancer clinical trials that led to FDA approvals between 2008-2018; this prevents researchers from understanding specifically how new products perform in this population, and it keeps black women from having access to potentially life-saving treatment options which are offered in clinical trials.

We, therefore, chose to examine the participation of Black patients in breast cancer clinical trials as the topic of our first research collaboration for the #BlackDataMatters initiative. This research study included two phases - a qualitative study with 48 participants, and a larger quantitative survey of over 250 patients which has recently completed data collection and is currently undergoing data analysis.

One of the most exciting things about this research is that we have engagement from the Black breast cancer patient community through Ricki’s advocacy work, and also access to deep rich clinical data on these patients through the Ciitizen platform. The qualitative study showed some interesting findings regarding the tactical, logistical, cultural, and emotional barriers that Black breast cancer patients face when considering clinical trials.

We are excited to disseminate these findings in the coming months and to expand our work together.

OSP: Specifically, could you tell us about the partnership’s work to pinpoint genetic and biological differences in Black patients?

AB: One of the most exciting things about the Ciitizen platform is our ability to extract disease and treatment information from the entire medical record for each participating patient - we are not dependent upon just what is in a structured EHR or claims dataset. We, therefore, have important clinical and genomic data on our patients such as their molecular subtype and biomarker status, as well as an understanding of their treatment outcomes.

For patients who consent to share their data for research through our platform, we are able to look for correlations between these variables. We are also working with innovative collaborators such as Dr. James Lillard at the Morehouse School of Medicine, whose Total Cancer Care research study is examining this topic in-depth and democratizing access to oncogenic data for cancer patients who are traditionally underserved in this area.

OSP: Could you please share some of the ways Black women could more effectively advocate for their care?

RF: Black women need more health literacy to be able to effectively advocate for their care. They need education on their health options and an understanding of their HERstory. Black families don’t readily talk about health in their households and because 74% of Black women are breadwinners for their families (IWPR analysis of American Community Survey microdata), they don’t want to burden their families with their health issues.

We need to make health and specifically breast health a kitchen table conversation for black families. We need to encourage open discussions and provide them with the knowledge they need to be poised to advocate for themselves. We have an HBCU internship program to teach young women about breast health to help them bring awareness to their peers, as well as serve as the catalyst for bringing the necessary health conversations to their families.

AB: This is a complicated question, as oftentimes we see unfortunately the Black women who are patients are doing everything they can to advocate for themselves but are faced with a series of barriers in obtaining optimal care. These barriers can be due to things such as their environment, the cost of care, deeply ingrained cultural beliefs, and either explicit or implicit bias on the part of some healthcare providers, unfortunately.

That said, one of the most effective things any patient can do is engage with a patient advocacy group early in their treatment journey. There is tremendous benefit from being supported by other patients who have walked the road you are about to travel.

Ricki’s Touch, the Black Breast Cancer Alliance is a perfect example of a patient advocacy group that draws on the strength of a community of Black women who are living with breast cancer. It’s also important that patients not be afraid to seek a second (or third or fourth!) opinion.

Black women should know that they have the right to seek out other options to ensure they are 100% confident with their treatment options and care. Empowering yourself with your medical records - which is the core mission of Ciitizen - is one way to facilitate getting second opinions and taking an active role in your treatment decision-making.

OSP: Please talk about some of the other ways you expect this disparity of care to change and improve down the road.

Alexa Berk, Head of Research and Real-World Evidence, Ciitizen

AB: Research is certainly going to be a huge driver of improvement in health disparities - identifying where the disparities exist and understanding their causes, whether these be biological differences, social determinants of health, provider bias, etc. Collaboration between patient advocacy groups, innovative technology offerings, academics, and life sciences researchers - breaking down these silos - will be crucial as well in addressing this complex issue.

Empowering patients to be at the center of the conversation - by giving them tools such as access to their own medical data - will also be key. Ultimately, improvements will be driven by the patients, by courageous voices like Ricki’s, as the ones demanding change.

RF: Our hope is that this disparity of care will change as we educate Black women and empower them with confidence to ask questions on their behalf and demand the care they deserve from doctors. We are starting a movement to arm them with the information they need to challenge their doctors to do what is best for them. Our community-based/grass-roots education campaign is designed to reach Black women where they live, work, play and pray.

OSP: Do you have anything to add?

AB: I want to thank you for the opportunity to speak on this important topic. At Ciitizen we feel strongly about empowering patients - through access to their medical records, by providing them with opportunities to participate in research initiatives such as #BlackDataMatters, and by unique, innovative patient-facing offerings such as our clinical trial matching tool.

Our goal is to break down many of the traditional barriers in healthcare that have historically contributed to health disparities. We are fortunate to have forward-thinking partners such as Ricki who are helping us bring this tool to all patients, across lines of race, gender, and geography.

RF: The time is now for this change. Black breast cancer can no longer be ignored. I don’t want anyone to die of breast cancer but, at a minimum, Black women deserve mortality rate parity for breast cancer.

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