Positive and provocative conversation focuses on solutions to promote change in cancer care and equity
Hosted by Lazarex Cancer Foundation; Sponsored by Medidata; Broadcast live from Washington, DC. on June 15, 2021 on Facebook and YouTube
Oncology and cancer care, at its core, is about saving lives. And while there are many hard working, dedicated and well-meaning people in the field, the truth is, there are also widespread barriers, problems and challenges that result in inequity and inconsistency of care. The color of your skin, the amount of money in your bank account, the type of insurance you have and the community where you live are just some of the factors that affect the care and treatment you get and that contributes to cancer health disparities, limits patient access and therefore ultimately affects cancer health outcomes.
When it comes to systemic problems of racism, bias, social injustice, inequity and more – we can’t spark change without understanding current challenges and brainstorming solutions. So the 4th Annual Disrupting the System Summit brought together disruptors, innovators and change makers in oncology and patient advocacy all united in one goal: searching for solutions to better level the playing field when it comes to cancer health disparities, patient access and cancer health outcomes.
PANEL 1 – BUILDING TRUST IN HEALTHCARE
Problem – Communities of color have a lot of mistrust and fear about doctors and the healthcare system. They don’t see themselves in providers or marketing materials, they aren’t reflected in clinical trials and they aren’t counted by their racial demographic.
Solutions – Organizations and healthcare providers must start thinking about the best way to reach community members, build trust, take time to go out into the community and also train medical providers to showcase trust and develop cultural competencies.
Dr. Jemmott outlined how the Community IMPACT program she leads seeks to break down cultural barriers and build bridges to treatment. Maimah Karmo shared the personal story of when she was dismissed in a healthcare setting because of the color of her skin and how she is now working to train women as community workers to increase awareness about breast cancer and Dr. Margarette Shegog shared the barriers she, as an African American woman, faced in becoming a family medicine doctor.
Listen to the panel’s full conversation: https://youtu.be/LGb-Hi_XA4Q
“To get trust, you have to be trustworthy. You have to teach these medical providers how to be trustworthy, how to engage the community and how to listen. What they do is put the onus on the community – it’s the community’s fault. But it’s a partnership,” – Dr. Loretta Sweet Jemmott
Moderator: Laura Evans, CEO of Laura Evans Media.
Panelists: Dr. Loretta Sweet Jemmott, VP of Health & Health Equity, Professor in the College of Nursing and Health Professions at Drexel University, lead of Community IMPACT and Cancer Wellness Hub in West Philadelphia; Maimah Karmo, Founder and CEO, The Tigerlily Foundation; Dr. Margarette Shegog, Family Medicine Physician and Member of the Behavioral Health Faculty at the Northern California Family Medicine Residency.
PANEL 2 – PAYER MIX: THE DIRTLY LITTLE SECRET IN HEALTHCARE
Problem: Payer mix – the percentage of patients that a hospital accepts who have public health plans like Medicaid versus private insurance contributes to health disparities, creates barriers to access and often determines who gets innovative, cutting edge and potentially life saving treatments.
Solutions: There was widespread agreement this issue needs more attention and awareness because it is not well known. Panelists said high level action is needed to address this systemic and structural problem, including mandating improved collection of demographic data on outcomes and care of all trial participants stratified by race. ethnicity and socioeconomic status. The discussion included the importance of holding hospitals and health systems accountable when they provide insufficient care for a person’s medical needs. Panelists pushed for increased patient awareness of this issue to speed up the path towards much-needed transformational change.
Listen to the panel’s full conversation: https://youtu.be/_LNbA7aYLFw
“It’s about transparency. We need to have a national dialogue on this,” Dr. John Whyte says. “Patients often don’t know what they deserve or if they’re receiving low quality care. Oftentimes people are willing to accept what they get and we need to help educate them about that.”
Moderator: Dana Dornsife, Lazarex Cancer Foundation CEO and Founder
Panelists: Ritchie Johnson, Founder of The Chris ‘CJ’ Johnson Foundation; Dr. Kim Rhoads, Director of the Office of Community Engagement, Helen Diller Comprehensive Cancer Center, UCSF. Dr. John Whyte, physician, writer, Chief Medical Officer at WebMD, host of Coronavirus in Context and former FDA official; Dr. John Whyte, physician, writer, Chief Medical Officer at WebMD, host of Coronavirus in Context and former FDA official.
PANEL 3 – TRUTH IN NUMBERS
Problem – The FDA does not mandate diversity in clinical trials and race and ethnicity classifications in many healthcare settings put all Black and Brown people into one bucket. This blurs facts, makes it harder to ensure equity and leads to the release of drugs that haven’t been tested on the target population for a specific cancer even if that minority or racial group is disproportionately affected by a particular type of cancer.
Solution: Panelists say this issue is beginning to get FDA attention but needs more deliberate, focused talk with clinical sites to drive change. Panelists also agree collaboration across the industry will help drive transformation.
What happens when we start counting this information? “We will have breakthroughs,” Alicia Staley of Medidata says.
“This is not going to happen passively over time,” Dr. Tracey Thomas adds. “It needs to be deliberate and it needs to be discussed with the clinical sites, the CROs (clinical research organizations) and the FDA.”
Listen to the panel’s full conversation: https://youtu.be/xQrBvooUnxc
Moderator: Dr. Marya Shegog, Diversity & Equity Coordinator, Lazarex Cancer Foundation
Panelists: Dr. Chip Petricoin, Co-Director, Center for Applied Proteomics and Molecular Medicine, George Mason University; Alicia Staley, Senior Director of Patient Engagement, Medidata; Dr. Tracey Thomas, Molecular Biologist.
Lazarex Disruptor Awards were presented to:
Dr. Loretta Jemmott, PhD, MSN, RN, FAAN VP, Health & Health Equity, Drexel University for her work leading the Community IMPACT Program that’s building trust and improving cancer health outcomes for residents in a medically underserved and socioeconomically challenged minority neighborhood. Listen to her acceptance speech: https://youtu.be/pmouiKz10vw
Craig Melvin, News Anchor, TODAY; Co-Host, 3rd Hour TODAY; Anchor, MSNBC’s Craig Melvin Reports for using his platform to talk about clinical trial opportunities like his brother Lawrence Meadows had. Craig and his brother worked together to raise awareness about the disease and the importance of getting screened. Lawrence died in December from colon cancer and Craig remains engaged in building awareness to honor his brother and his legacy and help others. Listen to Craig’s acceptance speech: https://youtu.be/Xag-drL2Xi4
Glenn Ellis, Health writer and educator and expert on Health Equity weighs in on racism, diversity and equity in healthcare. See his engaging and important conversation HERE: youtu.be/iE0omamjNTQ @ 34:30
Author Carmen Bogan speaks with Lazarex CEO Dana Dornsife about how a conversation at last year’s Disrupting the System compelled her to write a new children’s book – Willis Watson is a Wannabe. See their discussion HERE: youtu.be/iE0omamjNTQ @ 1:06:51
What can you do to continue disrupting the system?
- Learn more about Lazarex at Lazarex.org and how you can help us in our mission to improve the outcome of cancer care and give hope, dignity, and life to advanced stage cancer patients and the medically underserved by helping with costs for FDA clinical trial participation, identification of clinical trial options, community outreach and engagement. In 15 years Lazarex has assisted over 6,000 patients and we can always use help and support to assist more.
- Stay engaged with Lazarex us on Facebook, Twitter and Instagram.
- Learn more about Medidata at Medidata.com
- Keep working together to push for change, search for solutions and disrupt the system.
- Join us next year for Disrupting the System V.