'Information is medicine:' On social media, misinformation and trust for Black health
Kayla Nixon was 24 when a white, male doctor dismissed her symptoms in a five-minute appointment. She would later be diagnosed with uterine cancer.
"If not for my persistence...I may not be here today," she said on a panel at "State of Black Health: What Now," the second annual summit hosted by BlackDoctor.org in collaboration with USA TODAY.
She fought cancer alongside her mother, who ultimately died from the disease. "In her, I saw an advocate for herself and then I saw her build a community of people around her who could speak up to her in the moments when she was vulnerable."
Nixon, who works in communications for the Society of Gynecologic Oncology and the Foundation for Women's Cancer, said the experience has shaped her work, while speaking on a panel titled "Information is Medicine: Connecting Black Women with Reliable Health Information."
The panelists discussed the best strategies for reaching people with critical medical information amid a changing media and political landscape.
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Black women face higher rates of maternal mortality and cancer mortality than their non-white counterparts. Panel moderator Kianta Key with GCI Health cited research by the American Society of Clinical Oncology indicating that nearly half of Black women with metastatic breast cancer never received information about clinical trials.
It was one of several examples that came up during the discussion that pointed to why information and education are an important part of the healthcare process.
"Information is medicine because it is the beginning step to uplift our community," said Horace Clark, vice president and general manager at BlackDoctor.org. "Without having that information, that knowledge, we're not able to become the best advocates that we can for ourselves, our family and our community."
The panelists shared various strategies for disseminating information to their communities. Bianca Mayes from Planned Parenthood said they had a program in which they equipped nail technicians and barbers with crucial health information to give their clients, for example.
"I think black women are pretty educated. We are proactive. And I think when we're given the right information, we know what to do with it," Nixon said.
As some public health data sources get removed amid new presidential administration changes, panelists talked about how organizations and people may need to step in to fill the gaps.
Mayes said removing health information online could be dangerous and lead to later diagnoses, urging people in the room and health organizations to speak up about the changes online.
Clark said social media can be a tool for communicating important health information, but it's about what is being shared. Nixon acknowledged that influencers can sometimes spread misinformation, but others said they can help bring credentialed doctors into the conversation.
"Open the door," said Dr. Sharon Allison-Ottey on the panel, saying people with big following can help draw the audience, but then, "bring on someone credible. It's not them versus us. It is all us So you use whatever tool you have to get information to people that are at high risk or at moderate risk and need information."
BlackDoctor.org is a leader in Black health, connecting culturally relevant health and wellness information to empower consumers. USA TODAY is a sponsor of their second-annual summit.
This article originally appeared on USA TODAY: 'State of Black Health:' Panel on information for Black women
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