Put the information where the people are

This is the second of my contributions in a series of conversations about what the next era of vaccine governance and communication could look like. Members of The Evidence Collective will be talking with clinicians, scientists, policymakers, leaders, parents, and community members: the full range of people who shape and live with vaccine policy in the U.S. Hopefully, some conversations will confirm things that many readers already believe, and others will challenge them. Both are critical for us to find new ways forward. The work is part of a complementary effort with the Vaccine Integrity Project. You can find all interviews here, and you can fill out this form if you’re interested in being interviewed for this series!

Sarah is a mom of two, a wife, and has been an acupuncturist in rural Down East Maine for seventeen years and a doula for fourteen years.

When she was a new mom she experienced vaccine hesitancy herself and negotiated a slower vaccine schedule for her first son. Now, she’s the person sitting across from other nervous parents, helping to answer the questions they don’t feel comfortable asking anyone else.

She’s also the co-director of the Maine Doula Coalition and an MPH student at UC Berkeley, which is exactly why I wanted to take to her. She’s spending her days moving between many different roles that gives her a truly unique perspective.

Three things from our conversation that I want to highlight:

1. A political sorting of vaccine attitudes. For some of Sarah’s clients, they may have originally had questions, but now they are getting their kids vaccinated on schedule as a way of pushing back against a federal health apparatus they don’t trust because of who is currently in charge.

2. Failure to adjust the way we reach people. The institutions best positioned to communicate accurate information are still avoiding the platforms where people actually get their information. Flyers in waiting rooms and videos on medical association websites aren’t reaching most people. Sarah’s watched her concern about that get met with silence in meeting after meeting. We need to make sure the information is where the people are.

3. People trust people, not institutions. More specifically, they trust the people they’ve known for a long time. People like the nurse who’s been at the same hospital for 27 years and the WIC office staff who is also their neighbor. Rebuilding trust therefore also requires staffing and relationships. We can start doing this by investing in the people already working in communities like community health workers, doulas, and public health nurses.

What follows is our conversation, lightly edited for length and clarity.

Sarah: My understanding of vaccines has really evolved over time. My first son is 17 now and when he was born it was around the height of the attachment parenting movement and concerns about vaccines causing autism. I was hesitant as a new parent trying to find my way and wanting to make the best choices. There was also a broader national conversation happening that made me nervous.

We had a great family doctor, and so we took those concerns to him and told him that I was nervous. He worked with me initially, he said, “Well, how about if we do one vaccine at a time?” We did that initially, and that helped me become more comfortable the vaccine schedule. When my second son was born we followed the standard vaccine schedule for him.

I encourage the families that I work with to follow the original CDC vaccine schedule prior to any changes the current administration has tried to make [you can find ones on AAP’s website]. I know what it feels like to be worried about vaccinating my own kids. When I work with doula clients or patients, I try to answer their questions and make sure that people have good evidence-based information. But also, I know how much it helped me to have a doctor who just listened to me, heard my concerns, and figured out a way to get my kid vaccinated that didn’t scare me. I appreciated that. And it changed my comfort level for my subsequent child. I now try to take a similar approach when I’m working with families who are nervous about vaccines.

Because I am an acupuncturist I am perceived to be in natural or alternative healthcare. So, when I came out very publicly and strongly as an advocate for getting the COVID vaccine, a lot of people told me that hearing it from someone like me, made them feel like the vaccine was probably safe. It seemed to move some people who were otherwise hesitant.

Given all the conspiracy theories around the COVID vaccine, and now the anti-vaccine rhetoric at the federal level, what I’ve noticed is that my left-leaning, progressive clients, who are the majority of my clients, are now more willing to vaccinate their kids on the normal schedule than I might have expected. People who were vaccine-hesitant for themselves during COVID have since had babies, and when it comes to their kids, they want to follow the recommended schedule.

I think there’s a political identity component to it. It’s interesting how opposition to a certain political party seems to be shaping people’s willingness to trust science.

A lot are getting their health information on social media. I would say for the population that I work with, Instagram is a major source, and we know it’s not necessarily accurate information.

Pregnant people have told me that they know that the algorithm knows that they’re pregnant and is actively showing them specific things. Many of them know that what they’re seeing repeatedly may not be true, but it triggers concerns that they may not otherwise have. So, people bring their questions to me and to their clinicians, but oftentimes the questions that I’m getting are questions that were triggered because of something they saw on social media.

The great thing is that they are bringing those questions, right? If I can’t answer them, I refer them to their medical folks.

I’m not. I had some parents initially who were concerned about not being able to access vaccines. That concern has calmed down. What I see more now is a lot of confusion around what the vaccine schedule actually is and where to get that information, and if what is on the CDC website is actually what they should be doing.

I think state agencies, academic institutions, and these large medical powerhouses are really lagging behind in terms of the public education they’re providing on platforms like social media. I bring this up regularly at the perinatal advisory meetings I’m part of. Some are state-run, some are run by large regional or state medical organizations.

The messaging from actual experts has fallen far behind where people are actually getting their information. In these meetings, I hear a lot of: “We’ll make a flyer for the doctor’s office,” or “We made a three-minute video for the medical association website.” There’s real time and money spent on that.

So when I raise my hand and say this information needs to be on Facebook, Instagram, TikTok, and YouTube, because that’s where people actually are, it’s met with radio silence. Nobody wants to do it.

I think there’s a bias against those channels with many feeling that they’re “less than,” or not good enough for that particular group to use to disseminate information. It’s really hurting public health education.

I don’t think anybody that I work with knows what that committee is or even that it exists. One of the things I have learned is that the processes for how decisions get made are not opaque, right? We technically have a lot of transparency, but people don’t know how to access it, so there isn’t real transparency in the eyes of the public. It’s overwhelming to figure out where that information lives, and many don’t realize they have access to the materials on how those decisions are made in the first place.

Yes, but people have to be able to easily access it. It has to be right at people’s fingertips and in the places they go to for information. Few will go to a government website to find it. But plain language summaries of those meetings that also include, every time, information about what that group is, are really important. People are overwhelmed by information. So we need to make it easier for people to find it.

They’re not stupid. They legitimately want to make the best decisions they can for their families. But many Americans don’t necessarily have enough regular contact with the policy and decision making processes in this country to deeply engage with how they work and know how to provide input in a timely way. So we need to make it more transparent and clear; plain language summaries and information on social media could help.

Partly it’s putting information where people are actually going to access it. But ultimately, as a doula, what I see is that people trust other people.

Especially in rural areas like where I am, people don’t necessarily have easy access to their doctors. They also don’t always have easy access to trusted people in healthcare without making an appointment and going in. If your doctor is an hour away or there is a 4 week wait to be seen or you have to take time off from work, you might not want to book a whole appointment just because you have a quick question. And telehealth portals are improving that option, but it is adding work for providers who are already stretched to capacity.

I think the community health workforce, which includes community health workers, doulas, public health nurses, and other individuals who are deeply embedded in the community, is the next big wave of healthcare that needs to happen. It’s about the dissemination of accurate health information coming from relationship-based care, because people trust the people in their own communities.

Yes, and those people are also really cost-effective, right?

The return on investment is pretty impressive. I think there is a growing understanding that community health workers are actually really important to the system, both for improving health outcomes, but also I believe it will generate a lot more trust in science and in healthcare. With the community health workforce you have one intervention, the actual worker, who can improve a whole range of health outcomes and sometimes also social determinants of health. One of those outcomes is probably improved trust in science and medicine, but I’m not sure if anyone is measuring that? If not, it would be a great study!

In my area, I don’t necessarily see that institutions are making it harder for people to trust them. But there’s a vacancy where people don’t know what our leaders, state institutions, and universities are up to. I’m sure she’s far too busy, but I wish that the state CDC director would come on the radio every single day and give a little update. We have this really great public health system in the state, filled with smart and deeply caring people, and the majority of the public doesn’t even know it exists. They don’t understand that they’re living in a specific public health district that has specific priorities and people that are watching out for them. They don’t know. We need these people to be more present and visible.

I’m seeing an acknowledgment by large healthcare and hospital systems that they’ve siloed themselves. I’ve only started to notice this in the last year or so, but there is beginning to be a lot more community partnership between hospitals and community-based organizations. That’s giving me a lot of hope, because those community partnerships take pressure off the hospital systems. If we can get our big hospital systems to build better relationships with organizations that are already embedded in communities, that builds trust with the general population. People get better health information, and they have more trust in the healthcare systems they’re accessing.

The Next Era of Vaccine Governance series is being done in collaboration with The Evidence Collective and is part of a complementary effort with the Vaccine Integrity Project. If you would like to share your perspective with us as part of this series please fill out this form.

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