Health care epidemic of misinformation is rooted in problem of trust, experts say

The misinformation crisis in American health care is a trust problem, not an information problem, said the leader of an organization that aims to counter falsehoods about medicine and science.

Meanwhile, a panel of public health advocates, including a family physician, said trusted messengers, personal connections and cultural humility can change the tenor of health communication — and possibly save lives.

Experts delivered their messages as part of National Public Health Week, happening April 6 to 12. The American Public Health Association convened speakers in person and online to discuss this year’s theme of “Ready. Set. Action!” Part of the action is communicating accurate information about benefits of treatments and practices in a time when people are inundated with wrong claims about health care and public health.

"Good health doesn't just happen," said panel moderator Veena Thamilselvan, M.S.P.H. "There needs to be intentional storytelling to make that work appear in daily life."

A physician's lens: language, trust and goals of care

Aeriel Petty, D.O., a family physician and vice president of the Young Leaders Council of National Medical Fellowships, completed her residency in New York City and came to Washington, D.C., to pursue a fellowship in family medicine health policy research. She said the clinical encounter is only one small piece of a patient's health journey.

“It's important to meet people where they're at and understand where they're coming from,” she said. "I take a patient in clinic — that's just a moment of their lives. They live their lives outside of my clinic. Everything that they learn, everything that comes to them, is outside of my clinic, and they just have, usually a few short minutes with me, 30 minutes if we're lucky, together, and a visit to address everything that they need, want and deserve to know.”

In an age of misinformation, good resources do exist. Petty cited the work of Joel Bervell, M.D., known as the “Medical Mythbuster” for his work on social media including YouTube. He’s an active listener, she said, and physicians earn trust from patients when they learn and teach together.

Petty described the importance of meeting patients where they are — linguistically and culturally. Her primary research focus is on language-concordant care, the practice of delivering health services in a patient's preferred language, with a particular emphasis on Spanish-speaking populations.

"Spanish is the second most spoken language outside of English," Petty said. “And so I wanted to know, like, across the country, when it comes to providing care in Spanish, are we doing a good job or not? Are we meeting the need?"

It’s a question she also asks herself as a family physician. Petty raised a specific concern about patient portals and electronic health records, arguing that those tools often fail non-English speakers. Even when a clinical visit is conducted in a patient's preferred language, discharge instructions and follow-up materials are frequently available only in English.

“If those recommendations are not in their primary language, or they can't even get back into their health care patient portal, because it's not in their primary language, what good is that doing for them?” Petty said.

Petty said the same principle applies to what she described as shared goals of care, starting with a collaborative conversation between physician and patient about what matters most to the patient.

"Before I start making recommendations — do this, do that, take that blood pressure medication — it's literally, what do you want? What is meaningful to you? What do you envision as your ideal health care scenario? Or life? What’s your goal?" she said. "It's not just how long you live these days, but it's how well you live and making sure that you're able to do the things that you want to do to live a meaningful life, and not just the things that someone might tell you to do. And so understanding those shared values and what it looks like for the person in front of you to live a meaningful life — you have to talk about it."

Health literacy is important (but may be lacking)

In policy and patient treatments, physicians and other health advocates need to consider situations through the lens of health equity, Petty said.

“One size does not fit all, and if we act like it does, somebody is left out,” she said. Physicians and medical students should learn about health policy, but also consider patients’ health literacy.

“And this one was actually hard for me to learn personally,” Petty said. “They teach us medicine, they teach us how to make recommendations, and we want to learn them, because we want to take care of people and have them live healthy and happy lives. But then we give those recommendations oftentimes the way that we were taught them, right?”

She described an example from her clinical work as a family medicine resident. She understood the concepts around high blood pressure in a patient — and then a patient asked what it was.

“I kind of stopped for a minute, and I was like, what is it? And I know, I promise I understand what high blood pressure is,” Petty said. “But now I need to understand how to translate these medical topics in a way that any single person in front of me will also understand. And you have to be taught that skill, you have to be taught how to translate information in a way that anyone can understand so they feel like they are a part of their care, and they are also engaged and empowered to make those decisions that are going to help them.”

A matter of trust

Jessica B. Steier, Dr.P.H., PMP, CEO of Unbiased Science, delivered the keynote address and talked about the current national atmosphere around vaccine skepticism and mistrust of other interventions and treatments.

“Public health exists for everyone. Full stop. Not just the people who trust us,” she said. Part of health care includes compassion for people who disagree with health care initiatives.

Steier described a recent debate hosted by Braver Angels, a civics organization that encourages open, civil discourse instead of toxic politics. Instead of defenses of specific positions or policies, Steier said she heard people express feelings of abandonment, that no one was listening, and that the system failed them. People like Robert F. Kennedy, Jr., and the Make America Healthy Again movement represented something different, even if people could not fully articulate what that was, she said.

“So, I argue that the misinformation crisis is not primarily a knowledge problem. It’s a trust problem,” Steier said. “The mom who doesn’t vaccinate her child is not our enemy. She’s the product of her information ecosystem, her family, her community, her social media algorithm, which looks nothing like ours.

“She thinks she’s doing the best thing for her child, of course she does,” Steier said. “And it’s our job to show up for her, to listen first, and to make her feel heard before anything else.”

Added to that are battles with the very federal health institutions that health advocates have worked for and regarded as the bedrock of evidence-based guidance. “It’s disorienting in a way that is difficult to put into words,” Steier said. In public health, change stops when people stop believing it is possible and trying to make it happen, but bad times or difficult times do not last forever, she said.

Grandparents as health messengers

In the panel discussion, Kimberly Boller, Ph.D., inaugural executive director of Grandparents for Vaccines, described the mission of the startup nonprofit, which launched on Grandparents Day, Sept. 7, 2025.

"The idea, the simple idea, [is] that grandparents have stories to share about their lived experiences of the days before vaccines were widely available," Boller said.

The organization, founded by Arthur Lavin, M.D., FAAP, a grandfather and pediatrician, aims to reach all 67 million grandparents in the United States and activate them as trusted messengers. Boller said the group has deployed a multi-platform approach including social media, YouTube and earned media coverage. Several TikTok videos have accumulated upwards of 40,000 views.

Among the most powerful voices in the effort, Boller said, are the "polio pioneers," people who participated in the randomized clinical trials of the polio vaccine in the 1950s, and their family members.

"It just really resonates with me to hear people tell the stories of their of their siblings, of their neighbors, of their schoolmates, and really bring to life that experience and that history,” she said. “It's pretty much undisputable. They lived through it, hey saw it. It is history. It is our history in this nation.”

One particularly striking story, Boller said, came from a woman who described her sister's permanent brain damage caused by measles encephalitis as a result of a measles infection.

"When you see the video of her telling that story, it is so moving," Boller said. "You can put yourself in the place of what that must have been like for their parents, for where they worshipped, for their community. And that's really what I think hits the heart.”

Not all the stories center on tragedy. Boller said some of the most powerful content focuses on joy — the relief and celebration that accompanied the arrival of the polio vaccine.

"Bells were pealing from churches. Children were lining up to get vaccinated," she said, noting that the famous song lyric about "a spoonful of sugar" originated with a child who came home and told a parent about receiving the vaccine on a sugar cube. "The joy, the feelings of ‘we can do this’ — you know, this is not hopeless. This is hopeful."

Boller argued that leading with joy rather than fear is central to the organization's strategy for changing behavior. “What will change behavior is the hope, the joy, the excitement to be able to be out in the world,” she said.

A youth advocate’s on-the-ground approach

Isaiah Santiago, 21, founder of We Got This and currently a member of the Rochester City School District Board of Education, traced his path in public health back to age 16, when he launched a program in his hometown of Rochester, New York, aimed at steering young people away from drug and gang violence. Music was the entry point.

“I got a clipboard and a paper and I went out into the streets and walked straight up to young people," Santiago said. “I was like, I have a recording studio opportunity that you can sign up for. Would you like to be part?”

Rather than leading with statistics or warnings about the dangers of violence, Santiago said he focused on opportunity. The program ultimately helped 12 young people exit drug-related violence and two leave gang involvement.

“It was never me going up to them and saying, ‘I fear that you might lose your life with what you're doing,’” he said. “But it was, ‘There's a better option for you to follow, and this is an opportunity for that.’”

Santiago pushed back on what he described as a fear-driven approach to public health communication broadly. "A lot of times we see some of the ways or approaches that people come to conversations is by fear. And a lot of times fear versus fear doesn't really amount to progress," he said. "It's important to come not with a fear factor or fear approach, but to come with opportunity — but also urgency. And those things are possible without implementing more fear."

Now serving as commissioner of education for the Rochester City School District, which serves 30,000 students, Santiago said health is central to his daily work — encompassing vaccine conversations with families, mental health access, and statewide policy advocacy. It is important to have people with lived experiences, but also credible messengers, not only to help create the policy, but also to help educate the community on what the policy is and why the policy is the way that it is, he said.

Bridging the generational divide

Thamilselvan closed the panel by asking Boller and Santiago how communities can bridge the communication gap between older and younger generations on public health issues.

Santiago said the divide, even within families or households, often resembles “two generations on two separate islands screaming at each other from across the islands — and we can't even hear each other.” The fix, he said, lies in trust.

“Part of fixing the issue and part of fixing the divide is creating a bridge of trust, creating a bridge of understanding, creating a bridge of open-mindedness,” Santiago said. “I can learn something from you and you can learn something from me.”

He credited informal intergenerational conversations, including childhood talks with his grandfather, with shaping his ability to listen and learn across differences. To move forward and combat the issue of the generational divide, leaders have to create safe spaces, Santiago said, pointing to the connections between social isolation and youth suicide and gun violence.

Boller agreed on the importance of relationships for effective health messaging across generations and across issues. "At its core," she said, "is relationships."

As a family physician, Petty said she loves having grandparents and grandchildren in the clinic together. She cares for babies, children, teens, adults and older adults.

“And I can do it in the same visit, and it tells me so much about the shared values that every generation has, especially when we're talking about multigenerational households, and how something that affects one probably affects both, if you just let them talk and connect in their shared values,” Petty said. “It's a really special thing just to be able to take care of a family together and see how not only an individual can thrive, but a family and a community can thrive because of those connections.”