Health-related mis- and disinformation is running rampant. There appear to be false claims everywhere – in conversations, on television, in the news, on social media – about nearly every topic you can imagine – diets, medical treatments, vaccines, drugs, and diseases.
What we mean by “Misinformation” or “Disinformation”
Misinformation is different than disinformation! While both are verifiably untrue, misinformation was not created to cause harm.
ex: “The full moon is tomorrow”
This may be wrong but isn’t intended to inflict harm to anyone.
Disinformation is verifiably untrue, and is created to cause harm.
ex: “The COVID shot has a microchip in it”
This is wrong, and is intended to dissuade people from getting vaccinated.
The sheer scale of health-related disinformation, however, was perhaps most evident during the height of the coronavirus pandemic, as false information was invoked to dissuade people from getting vaccinated or wearing face masks.
This past October, we hosted a Disrupting Disinformation training with Empower Project for the Rx Foundation grant partner network. The training was designed for organizers, activists and volunteers to learn tactics for how to disrupt disinformation in their communities in conversation. It had broad interest among our partners from Massachusetts to Alabama, as many community-based organizations continue to face an ongoing barrage of disinformation. When registering for the event, we asked our partners to share one piece of mis- or disinformation that they’ve recently heard in their communities. They shared many, but most continued to be on the topic of health and COVID vaccinations: “The vaccine will give you COVID-19”, “The COVID-19 booster is just another way for the government to keep track of you”, “The COVID-19 vaccine changes your DNA”, and the like.
Many of our partners have been actively engaged in responding to the coronavirus pandemic, reducing barriers to vaccines and meeting the needs of communities who were not being served through existing COVID vaccine efforts. So it was no surprise that they encountered mis- and disinformation firsthand when initially hosting vaccine clinics or co-locating appointments, and well into 2023 as updated booster shots became available in the Fall.
Empower Project’s training equipped participants with tangible tools to disrupt false information intended to harm communities; many shared it was deeply relevant to their ongoing work. But how can we inoculate our loved ones, friends, and neighbors from believing false claims in the first place? And what role can trusted messengers play in correcting or combatting health-related mis- or disinformation?
To answer these questions, we want to take a moment to share a few highlights and lessons learned from our grant partner network, which includes many community-based organizations who have been diligently building and sustaining the health of their communities throughout the pandemic. Their stories outlined below provide powerful examples of how we can (re-)build or leverage trusted relationships, prevent mis- and disinformation, and innovate on strategies for countering misinformation.
The Messenger Matters – Vaccine Plus Partners as Trusted Messengers
Beginning in 2021, the Rx Foundation made grants to BIPOC- and immigrant-led, community-based organizations that played a critical role in responding to the pandemic by facilitating equitable access to testing and vaccination, providing healthcare navigation support and health education, and attending to the social and economic-related health needs of their communities.
While status quo public health responses failed to effectively reach under-served communities during the coronavirus pandemic, these grassroots organizations and community-led health efforts were poised and ready to connect BIPOC communities to much needed resources and care, including COVID testing, PPE, and vaccines, in addition to food, diapers, Narcan, housing and childcare assistance, and more.
Since 2021, all 14 of our Vaccine Plus – Community Health and Power grant partners did incredible work to connect their neighborhoods, towns, cities, and regions to much needed resources and care when conventional public health responses failed to effectively reach underserved communities with information, services, and resources. But what made their efforts so successful? Vaccine Plus partners were effective, trusted messengers in their communities, and understood the local context and needs to meet the moment.
For instance, in Cleveland, Ohio, the Northeast Ohio Black Health Coalition launched its Meals 4 Mommas / Delivering Hope program, to provide families with a month’s worth supply of healthy, fresh, and shelf-stable foods in light of pandemic restrictions, economic hardship, disability, and/or domestic violence. Meeting the moment, NEOBHC paired a month’s worth of food with personal protective equipment (PPE) like face masks, soap, and hand sanitizer. Their Executive Director’s porch was stacked full of boxes for families, set for distribution across northeast Ohio. Their provision efforts resulted in over 90,000 meals (breakfast, lunch, dinner, and snacks) provided to families since its inception. One program recipient shared, “Thank you. If it wasn’t for you [Northeast Ohio Black Health Coalition] and your team, I wouldn’t be able to feed my four kids right now”.
So when COVID-19 vaccinations became available, NEOBHC hosted vaccine clinics in their community. Already playing a critical role to connect people to wraparound services prior to the vaccine, NEOBHC was able to bring trusted and evidence-based information to its community and neighbors who inevitably were hearing both mis- and disinformation. At its community events, NEOBHC would bring health professionals and providers directly into the community to share more about COVID-19, and how to stay healthy and safe.
Because Vaccine Plus partners had already earned the trust of their community members, through work like meal provisions, their message was more resonant with people than the mis- or disinformation they would hear or read. In Louisville, Kentucky, this became evident through La Casita Center’s efforts during the height of the pandemic. In a recent Power is a Social Determinant of Health session with a few Vaccine Plus Partners, Dr. Patricia shared that healthcare accompaniment resulted in people becoming empowered with culturally appropriate, evidenced-based information about the virus, and in their own language. Armored with that knowledge, community members were encouraged by La Casita Center to share trusted health information gleaned from accompaniments with Dr. Patricia within their own networks, through relational conversations. Suddenly, communities that were once left out of the status quo pandemic response efforts were being reached with education and resources about the virus.
La Casita Center’s trustworthiness became even more evident when the vaccines rolled out in 2021. Traditional mass vaccine clinics often required providing personal identification information. For communities with mixed immigration statuses, this left people feeling understandably uneasy. It was a formidable barrier to receiving the shot. Leveraging their trusted relationship in the community, and with its external partners, La Casita Center was successfully able to advocate for more accessible vaccine clinics that did not require personal identification.
There are many more stories we could share about our partners’ work, but what connects them all is this – the messenger matters. When people are unsure of what to believe, they turn to who they trust first. Community-based organizations that have demonstrated their trustworthiness and commitment to the community are poised to inoculate people from believing mis- or disinformation in the first place. Through consistent, tangible support and one-on-one engagements, people are more likely to trust an organization that has built a relationship with them – by providing food or healthcare accompaniment services – and in turn, those organizations can play an important role in protecting their communities from unreliable or harmful information.
Dr. Lisa on the Street: Countering Misinformation Through Digital Media and Patient Engagements
Dr. Lisa Fitzpatrick, an infectious diseases physician and the Founder & CEO of Grapevine Health, began answering common questions about COVID-19 from people on the street and posting content related to the pandemic to YouTube in April 2020. Since then, she’s posted dozens of videos on the topic of COVID-19, vaccinations, and related health outcomes with a variety of health professionals; and she’s hosted even more in-person and virtual community engagements across the country to facilitate conversations with people about these topics.
Grapevine Health is a data-driven patient engagement organization that creates and delivers culturally appropriate, trusted, credible, and relatable health information to help close the care gap for underserved communities. Equipped with a microphone and camera, Dr. Fitzpatrick has been creating health education videos on a variety of health conditions, in a straightforward, light, and trustworthy way since 2019.
The inspiration for founding Grapevine Health arose from observing the earned mistrust communities of color have with the healthcare system due to medical racism, and the worsening health outcomes resulting from a lack of equitable access to culturally competent and trusted healthcare. So when the pandemic struck, Dr. Fitzpatrick was set to provide life-saving health education to communities of color throughout the United States.
In 2021, the Rx Foundation funded Grapevine Health to collaborate with organizations in our Vaccine Equity network, reaching Black and brown communities with accurate information about COVID-19 and the vaccines. The partnership involved spending time in neighborhoods with community leaders, answering questions about the vaccines outside and in the community (i.e. at a gas station in Mobile, Alabama, pictured below), as well as virtual “Ask the Doc” sessions.
Grapevine Health’s intervention proved immensely successful. The delivery of tailored and trusted information through one-on-one conversations between a doctor and patient led to a notable increase in vaccine uptake rates (up to 35%) among previously hesitant individuals, as reported by Grapevine Health.
Describing the success of this intervention, Dr. Fitzpatrick emphasized the critical role of the messenger, stating: “What I wish people knew or appreciated about our work is that the messenger matters”. For example, in partnership with the Bay Area Women Coalition, Inc., Dr. Lisa Fitzpatrick was able to get 21 people vaccinated in Mobile, Alabama through a single Dr. Lisa on the Street session at a gas station. Dr. Fitzpatrick continued, “When we match the messenger with the population, people respond and it can shift behavior. I think people don’t believe, or they feel it’s too simplistic to say, if you put me, Dr. Fitzpatrick, in front of a group of Black folks from the St. Louis then they’ll listen and respond to me more than they’ll listen or respond to an esteemed researcher at a hospital, who shares no cultural similarities”.
Throughout all her videos and content, whether featuring herself or other healthcare professionals, the language remains plain, clear, and culturally relevant. That has been a sticking point for Dr. Fitzpatrick, as she shared: “I think the way we build trust now is to speak to people in plain language and ensure they understand the language and nuances of basic science and medicine. Even if we say ‘the research was done’, what does that even mean? People often ask, “How do I know I can trust that? I think it’s painfully clear now more than ever that healthcare providers must step up and do our part to address health literacy”.
Dr. Fitzpatrick’s unwavering commitment to bridging the healthcare gap for underserved communities has clearly demonstrated the success of bringing relatable and trusted information to ordinary people, wherever they are – on the street corner, pumping gas, or getting groceries. Her work is an illustrative example of how we can innovate to counter health misinformation, while improving health literacy, rebuilding trust, and addressing pressing health needs at the same time.
- Further reading: Messengers by Stephen Martin and Joseph Marks
- Connect with Smart Politics, a progressive advocacy group committed to promoting social, economic, and environmental justice, is teaching progressives how to communicate more persuasively and productively with people we disagree with. They have a hub of available webinars and resources on the topic.
- Connect with Empower Project to host a Disrupting Disinformation training session with your network.
- Connect with the Disinfo Defense League, a network of intersectional organizations fighting disinformation which affects communities of color.
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