TOUCH, The Black Breast Cancer Alliance, in partnership with Breastcancer.org, Center for Health Care Innovation, Ciitizen, Morehouse School of Medicine, and Susan G. Komen Foundation, is ecstatic to announce that they have been awarded a Genentech Health Equity Innovation Grant. Genentech’s Health Equity Innovation Fund is specifically aimed at reducing disparities in healthcare access, quality, and outcomes by, for example, strengthening trust and community engagement in clinical trials between communities of color and healthcare providers and incorporating bias training and accountability with healthcare providers to achieve high-quality care for all patients.
Nearly 380 academic institutions, health systems, nonprofits, patient groups, think tanks and community organizations applied. During the selection process, Genentech prioritized applications that demonstrated principles of justice, diversity, equity, and inclusion in the design of their projects, as well as efforts led by People of Color or that embraced deep partnership and power-sharing with historically marginalized communities. They awarded $16 million to 40 grant recipients nationwide. See Genentech’s announcement here.
With low participation rates in clinical trials, Black women are missing access to newly emerging and often life-extending treatments that are not otherwise available. Moreover, trial data and resulting treatment protocols do not sufficiently account for the unique biological factors of Black Breast Cancer. #BlackDataMatters: Black Breast Cancer & Barriers to Clinical Trials is a comprehensive health equity research study that will investigate the deeply rooted barriers to clinical research participation. The study will seek to understand the root emotional drivers that contribute to fear and mistrust of research.
“Our overall goal is to change how the breast cancer ecosystem engages Black women regarding Black Breast Cancer and clinical trial research, to strive towards health equity for Black women diagnosed with or at risk for breast cancer, and to get Black women the best breast cancer care,” says Ricki Fairley, CEO of TOUCH, The Black Breast Cancer Alliance. “#BlackDataMatters aspires to uncover the most compelling messaging to effectively educate and motivate clinical trial participation. We have no choice but to get this right!”
“We believe charitable giving and strategic partnerships play a key role in addressing healthcare disparities, and we’re excited to partner with essential players in this space to develop innovative, lasting solutions. It’s more critical than ever that we act now to address systemic disparities in healthcare and education,” says Rajni Dronamraju, Senior Director, Charitable Giving Strategy at Genentech.
Collaborative at its core, TOUCHBBCA has brought together a stellar team across the patient advocacy, research and technology space to lead this important work: Breastcancer.org, Ciitizen, Center for Health Care Innovation, Morehouse School of Medicine, and Susan G. Komen Foundation. This group brings together the research excellence of Morehouse School of Medicine and the Center for Healthcare Innovation:
- Dr. James Lillard from Morehouse School of Medicine brings his 20+ years of experience conducting inclusive research with Black patients to the team. “Morehouse School of Medicine is leading the creation and advancement of health equity”.
- “This initiative is critically important to address the lack of Black women welcome to participate in breast cancer trials. It will be vital to make our clinical trials more inclusive for all women –particularly women of color,” says Joseph Gaspero, Founder and CEO of the Center for Healthcare Innovation.
Patient advocacy led research is at the center of this project, bringing the leading voices in the breast cancer space to shine a light on the particular challenges and barriers impacting participation in research among Black women.
- “Breastcancer.org’s mission is to ensure every person with breast cancer has the greatest care possible for their unique needs. The barriers to equal care for Black women prevent far too many people from getting clinical trial access and treatment options that could extend or save their lives,” says Hope Wohl, CEO of Breastcancer.org. “We are extremely proud to partner with TOUCH and leading health organizations to make a real and lasting change for Black women diagnosed with breast cancer.”
- “When it comes to breast cancer, Black women experience disparities in care at almost every step in the health care system. Susan G. Komen is committed to working to close the gaps in breast cancer outcomes – it is central to our mission. We are proud to work in collaboration with TOUCH and other leading breast cancer organization to seek meaningful change,” said Paula Schneider, CEO of Susan G. Komen.
- “No one fights alone. We all need to be in this together if we’re going to eradicate Black Breast Cancer and save lives. I could not imagine a more talented group to #GSD.” Ricki Fairley, TOUCHBBCA Founder & CEO
This patient-centered approach to research and community engagement is further enhanced by giving all participants full access to their medical records and the ability to understand their personalized and comprehensive clinical trial options through Ciitizen’s Clinical Trial Program.
- Ciitizen’s founder and CEO Anil Sethi built Ciitizen to “kill cancer in my lifetime, for everyone, that includes Black women!” after losing his sister Tania to metastatic breast cancer in 2017. “Ciitizen believes putting patients in a position of power and controlling their health data is the best way to accelerate innovative research and increase participation, especially in underserved and underrepresented communities” says Sophia Cornew, Ciitizen’s Director of Partnerships,
This multi-disciplinary group looks forward to sharing with the world the insightful learnings that come out of the #BlackDataMatters: Black Breast Cancer & Barriers to Clinical Trials comprehensive health equity research study. We need to work together to eradicate Black Breast Cancer. Our first step is to understand the deeply rooted barriers to clinical research participation so we can better design impactful interventions and solutions to serve the Black Breast Cancer community.
About The Partners
TOUCH, The Black Breast Cancer Alliance
Touch, The Black Breast Cancer Alliance was founded by Ricki Fairley and Valarie Worthy to drive the collaborative efforts of patients, survivors, advocates, advocacy organizations, health care professionals, researchers and pharmaceutical companies to work collectively, with accountability, towards the common goal of eradicating Black Breast Cancer. touchbbca.org
Breastcancer.org is a nonprofit organization dedicated to helping people make sense of the complex medical and personal information about breast health and breast cancer so they can make the best decisions for their lives. For more than 20 years, we’ve helped patients and their loved ones around the world by providing reliable educational resources and a supportive online peer community. www.breastcancer.org
Center For Healthcare Innovation
The Center for Healthcare Innovation (CHI) is an independent, non-profit research and educational institute dedicated to making healthcare more equitable for all patients. Our vision to be the leading global platform for meaningful change in health equity. Our Mission is to bring together experts and ideas from all over the world to improve healthcare for everyone, regardless of socioeconomic status, gender, race, ethnicity, or other social determinants. www.chisite.org
Ciitizen is a novel, patient-mediated online platform which allows patients to collect and store their medical records. Ciitizen turns these medical records into structured, longitudinal data that can be shared by patients with whomever they want - including for their own clinical treatment or for observational research and clinical trials. Through access and control over full, longitudinal medical records patients have a powerful tool both in their own care and to contribute to research. www.ciitizen.com
Morehouse School of Medicine
Morehouse School of Medicine is accredited by the Accreditation Council for Continuing Medical Education, Accreditation Council for Graduate Medical Education, Council on Education for Public Health, Liaison Committee on Medical Education and Southern Association of Colleges and Schools. www.msm.edu
Susan G. Komen
In 1980, Nancy G. Brinker promised her dying sister, Susan, that she would do everything in her power to end breast cancer forever. Two years later, that promise became the Susan G. Komen® organization and the beginning of a global movement. For over 30 years, we've led the way funding groundbreaking research, community health initiatives and advocacy programs in local communities across the U.S. and in more than 30 countries. www.komen.org