Electronic medical records, and the data they provide, are often at the center of discussion about data sharing, privacy, and consents. Those records are goldmines for companies digging for data that can be used for profit and commercialization. Underrepresented minorities are more often the subject of unconsented data sharing but, conversely, frequently are left out of the equation when data is used to make decisions about public health at the community and state levels.
The co-chairs of the special session Big Data and Health Equity have brought together patient advocates, health care professionals and other stakeholders as panelists for an exciting discussion of these topics, including possible solutions and guidelines. The session will be held on Tuesday, December 6, from 12:00 pm – 2:00 pm CT in Stars at Night Ballroom 1&2.
Maimah Karmo, BS, session co-chair and CEO of Tigerlily Foundation, is a breast cancer survivor and advocacy expert. She has been a voice for patients since her own diagnosis with triple negative breast cancer in 2006. This is the third year that Tigerlily and SABCS have joined together for a special session at the annual symposium.
Karmo is passionate about bringing diversity — not just of color but also of ideas — to the stage at SABCS. And she is looking forward to the opportunity to talk about health data and the consequences of sharing it. The panel will include not just patient advocates but academics, oncologists, government representatives, and bioethicists to talk about the complexities of data sharing and how it can be used to provide better services for all people.
“It’s not just about science,” Karmo said. “You also want the people who need that science and that innovation at the table as you develop solutions, infrastructure, processes, and guidelines. We need to value how they’re protected within the systems, structures, and data.”
Thelma Brown, BSc, believes that being a Black breast cancer survivor and research advocate puts her in a unique position to be a co-chair for this session and ensure it brings the right information to the SABCS audience.
“Diversity cannot begin to be implemented without varying thoughts, lived experiences, and backgrounds,” Brown said.
SABCS is home to robust discussion and exchange of thoughts among the best and brightest in breast cancer research, Brown said. The symposium not only presents the latest in research, but it spurs the imagination and raises questions like, what’s next? And how can we do better?
“The issues of big data and health equity are complex,” Brown said. “However, this is an opportunity for changemakers, stakeholders, and policymakers to consider those complexities, the knowledge of those working in this area, and commit to addressing how big data can impact disparate outcomes.”
“We hope to assure patients that when this is done correctly, their medical data is safe and that participating in responsible information sharing can help us all to advance clinical research,” said Charles Perou, PhD, session co-chair and breast cancer researcher at the University of North Carolina Lineberger Comprehensive Cancer Center.
Patient advocate Patty Spears, BS, hopes the session puts the human and patient element into data, that this isn’t just about numbers, it’s about people. She also wants to highlight barriers and facilitators to consider when using large amounts of data to drive treatments and cures for breast cancer.
Spears said data should be representative of everyone affected by breast cancer, and it should be used effectively.
“I hope this session will highlight the importance of sharing data to find better treatments and cures for breast cancer,” Spears said. “I think the greatest discoveries will come through collaborative efforts and sharing of data and ideas.”
Thelma Brown, BSc, research and patient advocate; breast cancer survivor
Maimah Karmo, BS, CEO and Founder, Tigerlily Foundation; breast cancer survivor
Charles Perou, PhD, breast cancer researcher, University of North Carolina Lineberger Comprehensive Cancer Center
Rhea Blakey, FDA
Michael Crawford, MBA, MHLA, Howard University
Andrea Downing, The Light Collective
Erika Hamilton, MD, Sarah Cannon Research Institute
Martin Mendoza, PhD, National Institutes of Health
Charlotte Owens, MD, Takeda Pharmaceutical Company
Barbara Seggara, DHSc, University of Puerto Rico
Jasmine Souers, BSc, The Missing Pink Breast Cancer Alliance
Patty Spears, BS, University of North Carolina Lineberger Comprehensive Cancer Center