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.

Elisabeth: Can you tell me a little bit about how you’ve thought about vaccines generally and what has shaped your thinking?

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.

Can you tell me about how you navigate this topic now in your jobs?

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.

Have the conversations shifted recently in the types of questions you’ve getting from your patients?

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.

Where do the people you work with get their health information, and what is making them decide whether or not something’s trustworthy?

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.

Are you hearing concerns from your clients about what’s happening on the federal level in regards to vaccine policy?

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.

What is something that you think the public health and government could be doing better to increase vaccine confidence?

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 want to talk a little bit about the Advisory Committee on Immunization Practices; they are the ones who make recommendations to the CDC for how a vaccine will be used once it has been approved by the FDA. Do you think any of your parents that you work with know what that is?

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.

What could be done to help with that? We’ve heard from others that plain language resources may be helpful. What do you think?

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.

Is there something you wish the people who make vaccine policy knew about the public?

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.

What do you think could help build back more trust in science and health?

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.

So, you’re saying building more of a bottom-up system versus what we’ve always done, which is top-down?

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!

Is there anything else you think public health institutions are doing that makes it harder for their communities to trust them?

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.

What is giving you hope when you think about the future of health in your community?

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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If you’re new here, welcome. If you’ve been reading along for a while, thank you, and get ready for something a little different today.

This is the first 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!

Patsy Stinchfield started her career as a pediatric nurse practitioner at Children’s Hospital of St. Paul in 1987, and within a few years found herself in the middle of a national measles outbreak that killed over 100 children, three of them in her city, two of whom died in her own hospital. These children had numerous medical interactions in the months before they died and could have been vaccinated at any one of them. That failure has shaped almost everything Patsy has done since.

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Patsy has decades of experience in direct patient care in infectious disease and immunology, specializing in vaccine-preventable diseases. She was the first nurse voting member ever seated on the Advisory Committee on Immunization Practice (ACIP)*, from 2004 to 2008, and remained a liaison until 2023, representing the National Association of Pediatric Nurse Practitioners. She ended her career at what became Children’s Minnesota, leading the organization through the COVID pandemic as Senior Director of Infection Control while simultaneously contributing to multiple COVID vaccine ACIP calls per week. She also shared her expertise through volunteering for sixteen years, including as President at the National Foundation for Infectious Diseases (NFID).

I wanted to talk with her because she has seen so much and has a perspective that I think we can all learn from as we envision what the future looks like for vaccine communication and policy in the United States. She’s witnessed kids die from vaccine-preventable illnesses, she’s had conversations with concerned parents, and she’s seen the ACIP operate from the inside. She is willing to say what worked and what didn’t so we can learn and go forward into something better together.

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We had a great conversation that you’ll get to read a snapshot of below, but two things have really stayed with me.

• Her suggestion to rename ACIP something like the Communicable Disease Prevention Board. She thinks a focus on preventing infectious diseases broadly will show the public that we don’t just care about vaccination, but about preventing diseases that can have severe consequences for families. Vaccines are a critical part of this process, but things like air handling and hygiene matter too, especially in pandemic times. Regardless of scope, she believes the ACIP name should be retired to mark a new way forward.

• Her illustration of a new vaccine policy ecosystem that is shaped like a wagon wheel instead of the usual top-down approach.

I also really appreciated her willingness to acknowledge that we need to change the way we communicate and reach people for this new information ecosystem.

*For those not familiar, the Advisory Committee on Immunization Practices makes recommendations to the CDC for how a vaccine should be used once it has been approved by the FDA.

Below is our conversation, lightly edited for length and clarity.

Elisabeth: There’s a lot that has happened over the last year and a half in the world of U.S. vaccines. What are some of the most serious long-term risks from these current disruptions?

Patsy: I don’t think we can overstate how much of a crisis we are in right now. The health of American children and the health of American society are very much at risk. This time is very tenuous, serious, urgent, and I would consider it a public health crisis.

Have you already started seeing some of these downstream effects in your work?

We’re all seeing it in the rise of measles. It is not under control. I’ve taken a temporary position as the Executive Director of NFID’s Measles Collaborative to help steer new interventions towards an old problem, one we had eliminated.

We know vaccine-preventable diseases like measles can have severe or fatal outcomes. That’s why we vaccinate. And the majority of parents still vaccinate their kids on time. But, we also have a population of parents who are just so confused and have heard so many conflicting things. They just don’t know who to believe, so they throw up their hands.

That’s now combining with a population of young clinicians who never expected to have to manage the resurgence of these vaccine-preventable diseases. So we have lost evidence-based governance, have a less-than-optimally prepared base of clinicians, and a really confused set of parents.

I fear that we’re going to get inertia and that these pathogens are going to win.

What do you think is driving some of this erosion in trust of vaccines?

There’s a lot going on, including loss of trust and confidence in entities overall.

People have lost trust in the government. Some see vaccines as an extension of government because of school entry requirements and because they’re approved by the CDC. We’ve lost trust in public health. You know, don’t make me wear a mask, don’t make me stay home, and what was that six feet all about? COVID eroded a lot of confidence.

Then there are organized and loud voices that are not evidence-based, and they are finding confused followers who end up trusting their mis- and dis-information.

Then, the people in government, in science, in academia, in clinical medicine, and in nursing are all exhausted from having the same vaccine conversation multiple times a day. So they lose patience, come across as cold, and it becomes a self-fulfilling prophecy.

Together, all of these factors produce what we are experiencing today.

So, what are some solutions that you think could help right now?

There’s a long and a short game here. The big picture is that we have to rebuild trust, and trust takes time. Trust is earned, and you earn trust by showing up, being seen, being consistent, being trustworthy. People will trust you when you help make their lives better. That takes time to achieve, but there are things we can do to work towards it.

First, we have to change the timing and setting where these conversations happen, and we have to change the messengers and the methods of our communication. We just can’t keep trying to communicate about vaccines in five minutes or less right before the vaccine administration. That is trying to fit a square peg in a round hole. It is just not going to fit. We also have to communicate with people earlier, like as soon as they get pregnant, before disinformation reaches them. We have to listen first. These conversations need to be two-way and with plenty of time to absorb, ask questions, and really communicate.

Second, we need to work with messengers the public sees regularly and already trusts, like school nurses or their local pharmacists.

Third, we need to invest in science education and critical thinking starting with the earliest ages. We need to help kids and adults learn about science, how to critically evaluate information, and how bodies work.

What are your thoughts about what worked well for the ACIP, given you served on the committee for many years?

The ACIP really was an excellent, internationally recognized resource. We regularly had people from all over the world attend to learn how we transparently made public policy, engaged the community, and worked within a framework of interdisciplinary decision-making. So, I don’t want to throw ACIP all the way out; it was a very good model.

The things that were really strong were the science reviews. We rigorously evaluated the available evidence to make recommendations through workgroups of subject matter experts. We also had a strong model of co-leadership. You had someone who really knew the rules of order and the ins and outs of CDC. They would call things out and keep us on track. But then they also partnered with a well-respected clinical expert who’s really gifted at helping lead a conversation. I think that model was good.

I also think having voting members with a variety of expertise was good, and the representation within the members improved over the years. The interdisciplinary nature is really critical, and the liaisons representing various organizations were there and could help answer questions.

We know it isn’t perfect though, so what do you think ACIP could do to improve?

One is it’s a little bit academia-heavy, and I think we need more practicing clinicians, nursing, and pharmacy voices there. We need more people who know what the implications of the decision will be for their practice, for their patients, etc.

But our biggest failure, in my opinion, was that we could have done a much better job communicating to the public about what we do, who we are, and what we were actually discussing – before, during, and after our meetings. We should produce plain-language summaries and help flood the zone with true information.

We also could improve by supporting implementation, which was not in the charter. So when I brought that up, it wasn’t discussed. We advised, then the CDC director approved, and then it got turned over to the states. All 50 states then had to come up with a plan, for example, for COVID vaccines. I really felt like our fragmented implementation was fraught with problems because of social media. People get confused when their sister-in-law in Texas can get the vaccine, and they can’t in Minnesota. The different policies just cause utter confusion. So I do think there needs to be an implementation arm of ACIP that works with states, associations, and other groups.

I also think we should reframe the committee to focus on preventing infectious disease. We’re not trying to just promote vaccines. We’re trying to prevent infectious disease, but that’s not how it comes across to some of the public. We could include recommendations around hand hygiene, testing, masking, air handling, etc., in these conversations around vaccines, so people can see them as one vital aspect in an overall system focused on preventing infectious disease. These specialists exist at CDC and in hospitals, so it would be a reorganization promoting collaboration rather than siloed work.

What might a new model of vaccine communication and recommendations look like?

It can’t be top-down like it always has been. I’m thinking perhaps we envision it more like a wagon wheel, where the science is in the center, and all of the spokes radiate outward as equal partners rather than a chain of command.

Around that hub sit a public or community representative, public health officials, practicing pediatricians and other frontline clinicians, vaccine scientists, communication experts, and implementation scientists. None of them outranks the others, and the decision gets shaped by everyone on the wheel.

This matters because it catches mismatches that pure science can miss, like proposing a vaccine at three months of age when the standard well-child schedule doesn’t even include a three-month visit. A clinician or an implementation scientist catches that instantly; a room of research scientists alone might not. The goal isn’t to weaken vaccine research. It’s to stop treating it as the only voice that gets to decide how, when, and to whom a recommendation actually reaches.

If you had to prioritize one or two things over the next few years, where would you focus first as a community?

The first is transparency. We need to own our mistakes without defensiveness and be clear about what we learned and how we will try to prevent those same mistakes from happening again. So I would start with transparency about where we’ve come from, where we are now, and where we as a community want to get to.

I do think it would be wise to say we’re not going to just go back to the way ACIP was. There are definitely some things that were fantastic and internationally recognized about that group, and we’re going to keep that. But there were some things that we could have done better, and we’re going to look at those. No shame. No blame. Just agreement on being the best we can be.

What is giving you hope right now?

I’m so appreciative of the many amazing people who have stepped up and filled the gaps and supported this work with advocacy, legal monitoring, data interpretation, funding, collaboration, public/private partnerships, toward a disease-prevention system that is evidence-based and inclusive of the community and multiple disciplines, like the Evidence Collective, Vaccine Integrity Project, and the Measles Collaborative. I’m also finding hope in the many people who are building new ways of reaching people where they are – on social media and in communities. We have to reach people where they are in a way that works for them, not just for us.

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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