Immunization Awareness Month: Dr. Reed Tuckson on Bolstering Trust in Health and Science

Transcript

Emily Holwick: Welcome to Inside Family Medicine, where you hear from leaders and peers in your specialty while learning about new tools and resources. I'm your host, Emily Holwick, a member of Team AAFP. Today, Dr. Reed Tuckson is joining us to talk about the importance of promoting trust in the medical community and science.

Especially when it comes to information about vaccines and the role family physicians play. Dr. Tuckson is a co-founder of the Black Coalition Against COVID and a co-founder of the Coalition for Trust in Health and Science, a group of 90 leading organizations, including the AAFP. Uniting to enhance trust and counter the effects of misinformation.

Dr. Tuckson has held leadership roles at the National Institutes of Health, National Academy of Medicine and numerous federal advisory committees. He graduated from Georgetown University School of Medicine and completed his internship and residency in general internal medicine at the hospital of the University of Pennsylvania, where he also did a general medicine fellowship and was a Robert Wood Johnson Clinical Scholar.

Thank you so much for joining us, Dr. Tuckson.

Dr. Reed Tuckson: Thank you so much. Great to be with you, Emily.

Emily Holwick: Well, first tell us what drove you to help create the Coalition for Trust in Health and Science, and what's the coalition's goal?

Dr. Reed Tuckson: We developed this out of, actually, the experience that we had during the COVID experience and my work with the Black Coalition Against COVID.

It amazed me on Easter Sunday 2020 when we mobilized the Black health leadership, the four Black medical schools, the National Medical Association, the National Black Nurses Association and a few others, when we mobilized that group to fight against the challenges of COVID.

‘We care about whether you trust us or not’

The first town hall that I did, the very first radio program that I did, the first thing that was mentioned was Tuskegee, and that just truly shocked me and concerned me because when I was health commissioner in Washington, D.C., 40 years before that, during the height of the AIDS epidemic, the very first thing that people talked about on the radio or any town hall was Tuskegee.

And so I was distressed that the American health ecosystem, its research enterprise, its policy enterprise, its delivery system, had done nothing in 40 years to take Tuskegee off the table as a concern of distrust or issue. And that stayed with me. As we move through COVID and as we look back after a couple of years of experience, it also distressed me.

On the one hand, I was in fact, quite frankly, excited and exuberant that the Black community for the first time in history closed a disparities gap as referenced by primary series COVID vaccines. But what I also observed was that Black life expectancy during the pandemic was better than white America, because the vaccination rate for white America leveled off from the early stages and it didn't go up or down, it just stayed consistent, whereas the Black community really elevated quite rapidly. And that really gave me a sense that this issue of mistrust and distrust was not just an issue for the minority communities, which it had been typically viewed as, but it was an American issue—all of us.

And I realized that this was a fundamental existential threat to every mission statement, every professional oath, every personal goal of committed health professionals and organizations, that this was really something that we would have to get our arms around, because after all, the sanctity of the patient-physician relationship is a sine qua non that guides what we do.

And so out of all of that experience, I decided that, is it possible for the first time in history to unite the entire health ecosystem end to end? Can we lay down whatever our differences of opinions are on fundamental business issues, but can we get to a point where on something that has the moral and ethical weight of dealing with how we communicate information and how we enhance or regain trust with the population? That really is more important than almost anything that divides us.

And to my amazement, as I conclude this answer, is that from just dialing cold calls, now actually more than a hundred organizations representing the entire breadth of the ecosystem, and so we now have brought together around this notion of how do we help the American people make evidence-based, personally appropriate choices and decisions for themselves, their families, and the communities in which they live.

And that means that we've now gotten the American Association for the Advancement of Science and Academy Health, our fundamental research major organizations, the hospital associations, the physician associations and specialty societies (thanks to AAFP), nursing associations, pharmacists, the health insurers, the public health agencies, ethics institutes, the regulatory agencies, NCQA, the Joint Commission, and then patient groups as well.

And there are many others in between, but if you can just sort of imagine everybody coming together and just making a statement to the American people, and that statement is, “We care about whether you trust us or not. We will do what we have to do to earn or regain or maintain that trust, and that it is very important to us that you are able to make your own personally appropriate choices and decisions based upon the availability of the best scientific evidence that can inform those choices and decisions.”

Emily Holwick: The amount of groups and organizations and the level of those organizations really just serves as a testament to the fact that this is so needed and that all of these different groups are seeing the same thing: the need for increasing that trust in health and science, and addressing misinformation and offering credible sources of information, particularly when it comes to vaccines.

I'm curious to know what need you see this coalition filling for both clinicians and for patients.

Dr. Reed Tuckson: I think first for looking at it through the prism of physicians and other health professionals and how they engage with people, we really are going to have to learn the lessons that COVID pointed out, and very much important in those lessons are we do have a tendency at times to talk down to people, especially to people who disagree with us.

Learn to listen

We have a tendency towards finger wagging. We also need to be more humble in understanding—and this is a fundamental issue that we're all having to learn how to deal with—and that is that not every community at every time shares our same presumption that prolonging life and preventing death is the number one agenda on a community's portfolio, that sometimes there are other considerations.

The economy, going back to school, there are many other factors, and that there was a tendency by many parts of the country to think of us as being high-handed, dictatorial, imposing our values on other communities that may not have shared that with us. And so, one of the first things we have to do is to instill in our own selves a willingness to look at things we may not have done as well as we wish we had.

There is a note of humility that we have to have, but then there's also a sense of how do we communicate with individuals and populations to achieve shared understandings and shared visions. So the second thing that we want to really emphasize and do a lot is listening. We have to learn now to take time and listen, and listen to where people are really coming from, why they are distrustful of the guidance that we may have, what are the predicates to the distrust, and what are the predicates to the willingness to take in false information or information that simply is not conducive with best decision-making. So that level of listening and humility is very important.

I think through the level of the patient. We do have the opportunity—and just imagine, if you will—of the hundred organizations that I've talked about, each of them have direct opportunities to engage with the American people. Hundreds and thousands of workers right now are touching millions and millions of Americans, whether it is the care manager at a medical group, whether it is the discharge planner at the hospital, whether it's the person that enrolls you in a clinical trial, whether it is the public health official about to go to a town hall in Montana, whether it is the clinician talking to a patient in the confines of the therapeutic arena.

There are so many touchpoints, and what we've got to now do is to make every one of those encounters a trust-enhancing encounter. That's the scale that we have to be able to work on here, and it is going to take a long time. Let us make no mistake that the challenges that we are now facing are a generational challenge, and it's not going to be addressed with quick little solutions, quick little programs.

This is going to take time and we have to be prepared, and we are preparing ourselves, for the long run building for what we all want the world to be, as opposed to being so angry and fighting about what the world is today.

Emily Holwick: I really like that notion that every patient encounter is an opportunity to increase that trust and build that relationship that's so integral to establishing that trust when that person knows that you care about them as a patient, as an individual.

And that's something that is so unique in primary care and family medicine, too. At a time when there's so much mis- and disinformation, especially around vaccines, how has the coalition's work evolved to meet that need?

Dr. Reed Tuckson: Well, I think we do realize that we are right now outgunned, that the level of confusion and chaos that has been created very effectively by people whose agenda was to create massive national confusion and chaos, they have been very successful and it is going to take a lot of effort to overcome that.

I think that I am, like most of us, really concerned about the erosion of the ACIP and I think we're all concerned about really whether or not the information coming out of government will be credible or will there even be the data that we can rely upon to be able to make the kinds of recommendations that need to be made.

Clearly, there are going to have to be alternative pathways, and I am really worried about how those alternative pathways will be erected, how will they be legitimized, how will those pathways be communicated as being more trustworthy perhaps than even the ones that are coming from government.

So this is going to be a delicate dance right through here. But I think the other part of this is—and this is the perhaps the hardest part for the long run—is to really take the time and listen to those who are seeing immunizations and vaccines through a different prism.

I have had the privilege multiple times now, through video conferencing and in person, to engage with folks who, operate under the banner of the MAHA Moms, the Make America Healthy Again Moms. It is very interesting to sit and listen and talk to them. It's very humbling to sit and listen to talk, but I think that's what we really are going to have to do when it comes to issues of vaccine, but also other elements that are part of that agenda.

And so I think that we've got to find a way to have some things that we can agree on as a basis. For them being able to talk more about the things we don't agree on.

But the conclusion to your question is one that I cannot be pollyannish about. We are going to have a very hard time and we're going to have a number of dueling experts, dueling experts from the federal government. And the people running federal government agencies have very lovely titles themselves. They come from very prestigious academic backgrounds, and so they will be able to stand toe to toe with experts from outside of those echo chambers.

And so who will the American people believe? Who will they trust? What information will they use to make their own personally appropriate choices? This is going to be a difficult coming up couple of years, but at the end of the day, clearly there are going to have to be alternative pathways and alternative sources where the expertise of the American scientific and medical leadership is able to coalesce the best guidance, keep reinforcing it and developing it based on the best principles of science and best principles of surveillance and disease tracking.

We're going to have to bring all that to a very high focus and then find a way to help people to make sense out of what may often be two different pathways of information, and how can they then square the circle. That's an important challenge. It is unfortunate that we are in that position, but the American people do deserve to hear from the best of America's science and health experts as they make their choices. And we have a responsibility to them to give them the best information that we possibly can.

Emily Holwick: In your work with the coalition, what are some of the main concerns that you're hearing from clinicians and partners around medical misinformation, and how do you help equip them to address it in their own clinics and communities?

Dr. Reed Tuckson: When we first began about two years ago, we had what was then an almost laughable naivete that said that as we saw egregious elements of misinformation, that we would try to address that, and we would, quote-unquote, correct the record with the best guidance, only to find that even as we were discussing it, the cliff upon which we were standing was eroding under our feet. The mountain dissolved and we are all thrown into this massive free fall where every day, almost as if it was a hornet's nest, just flying about, you can't knock all these different pieces of misinformation down very easy. It's just too much coming at you all the time.

Teach people how to understand what they read

And so I think that what we now have to be able to start to do is to teach people how to make sense out of the information that they are reading. How can they be educated to understand how to evaluate the veracity of what they are seeing?

But at the end of the day, let's really look at the ugly monkey that's on the table right now, and that is the negative side of artificial intelligence. I love artificial intelligence in terms of the positives that it's going to bring to us. But just the other day, I was fortunate to have been, I had an editorial that I was requested to write for the latest journal of the American College of Physicians. And it was an editorial in response to a study that showed how absolutely easy it is without any coding experience to go into the Chat GPT store, manipulate products that are there, to have them deliberately make false information, false conclusions, but look very much like traditional science publications with scientific jargon, charts, tables, graphs, bibliography, the whole deal.

And so the point of that meaning that as more and more Americans demand, or are expressing, really militant attitudes—that say, “I'm going to do my own research. I am my own citizen scientist, and I am going to do the work I need to do on my own to figure out what's best for me”—that those well-meaning people with great energy and enthusiasm (and we've always asked patients to take more responsibility for their health; we've always asked for that), now they're going to be thrown into a world where they have absolutely no idea whether or not what they're reading has any veracity whatsoever.

So what does this ultimately mean for the clinician? It means there’s going to be a lot of people who are going need a lot of our time to be able to make sense out of the stuff that they're reading.

I think ultimately, and what I'm calling for, and I said this in a keynote speech in front of the health insurance plans within the last couple of weeks, was we're going have to deal with increasing reimbursement for the time that physicians are going to have to spend, because there's simply no other way, at the level of real decision-making, for people to get the information and the guidance they need, or to have their questions answered (unless it is in those conversations with their clinicians). And they're going to need to have the time and be paid to do it.

Emily Holwick: That actually leads me to one of my other questions I have, because, as you said, it can be time-consuming and really taxing to have those conversations about vaccines with patients who are resistant.

So how would you encourage family physicians and other clinicians, especially in those hard moments, to continue to promote the importance of vaccines and take that time to have those conversations?

Dr. Reed Tuckson: First of all, you need to listen to where the patient is coming from and why is that resistance, where does the resistance come from. And you have to start to understand what it is that is the basis of their decision-making.

And that decision-making is a combination of either a sense of really wanting to take control and having anecdotal experiences that show them that it is in fact possible to be even healthier without the vaccine. And then there's going to be the other folks’ part of the decision-making, which is the fear that has been instilled about secondary consequences of vaccines that have been put into their mind. And so you’ve got to be clear about where they are on that spectrum.

Secondly, I think that then we are going to have to really, again, show them the best, simple understanding of what it is and why we believe what we believe. What does the science say? And if you can be able to then debunk things like the false understanding of the journal article in the Lancet, so many years ago, that many people base their concern around, and reminding them, showing them, that that was in fact retracted and that it is no longer—it never was—the accurate science that was presented. So I think it's going to take those sides.

But I think ultimately, and this is really the hard part, I have asked the Hastings Bioethics Institute and the Hopkins Bioethics Institutes to come together to produce a new guidance, a new ethics guidance, for our responsibility for having these conversations with patients. Because when I was always, always trained, when I was the health commissioner in Washington, D.C., when I was leading efforts against COVID, it has always been a sense for my personal mission, the oath that I took as a physician and my responsibilities with my public job—all of them required that I do everything in my power to be able to prevent death and promote life and disease. And I was duty bound to do every single thing I could every time, all the time.

Now we're in a situation where it may not be in fact appropriate for us to always just think that that's the responsibility we have at that moment, is to continue to push, push and push. Because what you can also do is to ruin the relationship that allows any other things to occur, so that when you finish a horrible discussion or a fight around the vaccine issue, that mother may still have an issue with breast cancer, and she needs to have a conversation about breast cancer. She's going to need to have a conversation about her husband's prostate cancer. How do we maintain the therapeutic relationship, the sanctity of the patient-physician relationship for all of the things, especially in family practice, where we are dealing with so many issues, so many different conditions? How do we maintain the ability to discuss all of the things that come before us if we ruin it over one.

Preserve the patient-physician relationship

So there will be this ethics article published in the American Journal of Public Health, I do believe in the next two weeks, and hopefully it would just sort of say to all of us, “At some point, you may have to back off. It is OK to back off on a particular issue after you've done everything that you can. But above all, the preservation of the relationship may well be—and probably is—more important than our disagreements over a particular issue, no matter how vexating it is for us, and particularly when it threatens or endangers the health of our children.”

I mean, my God, this is going to be hard for us to learn what our limits are, but at some point we come back. And I was lucky enough to be, one of my jobs was to be the senior vice president for professional standards of the AMA, and under my purview was the Ethics Institute. And so I will say that I am deeply imbued in the primacy of the patient-physician relationship and how that sacrosanct relationship has to be respected at all costs.

Emily Holwick: It is so integral to primary care and the practice of family medicine as well. Your passion for this topic is so inspiring and invigorating.

I know people who are listening are going to feel empowered by it to go into their clinics, into their communities, and continue to have these important conversations.

I'm wondering if you can share a moment or a story that made this issue of misinformation so personal for you, or even for someone you know, and what drives your passion—something that underscores why this work matters so much.

Dr. Reed Tuckson: First of all, the passion derives from the privilege of being a physician, and it also derives from having had the privilege of being the commissioner of health for a major city. When you're the responsible scorecard keeper, when you are the one that tracks the deaths and you have to deal with the deaths and are aware of the deaths and you see the death counts and you know where they come from, when you realize that the consequences of failure is death, that animates you pretty good.

‘We’ve got to evolve’

But what most recently kind of got me, and is telling me what we have to do as a ecosystem, all of us, is I was aware of a conversation going on online with a young mother who says online, “I am very worried about my child getting measles, and that scares me. However, I'm also very worried about what I'm hearing are the consequences that could occur from taking the vaccine. I don't know what to do.”

Immediately, a woman writes in: “Hello my dear. I feel your pain. I understand your suffering. I went through the same problem you did. I did my own research. My research led me to decide that we were not going to vaccinate our children and that our kids are doing just great. So you're on the right track, so don't worry about it. You don't have to vaccinate your kids, and we got you. And welcome to our club, our forum, our social network. We got your back. And if your kid does get sick, we'll tell her here are the things that you can try. All these different things that we think will work to mitigate the consequences of having been infected with this disease.”

That scares me. And it scares me not only because you know of just what was transpiring, but what worries me is that we, the health infrastructure, the people who—the health scientists, the researchers—we are not there for that woman at that moment, but the other folk are. We are not embedded in these conversations with the American people at the level in which these conversations are going on.

And so what frightens me is that we don't see ourselves often enough being in these places where the conversations are going inside the echo chambers. We're standing back going, “Tsk, tsk, tsk. Isn't this terrible?” But there are others who are demonstrating—you see what I'm getting to here is, the level of passion that many of the people that we do not agree with have is very passionate, and they are being there for their neighbors and their friends in ways that they believe are helpful.

Do we mount ourselves the same way? I think we don't. And so we've got work to do to do things differently, but we've got to change, we've got to evolve. And we don't like that evolution because it forces us outside of our comfort zone.

Emily Holwick: That story really illustrates the challenges that a lot of physicians and scientists are up against, because you're right, people are getting their information from someone online who can answer them within two seconds instead of going in and having a conversation with their doctor.

And like you said, if they feel seen by that person, maybe they're going listen to them. So yeah, a really good job of illustrating that.

Dr. Reed Tuckson: I like the way you said that. I’d like to say that you used the right phrase for me, and that's, “They feel seen.” And again, we've got to, there's a lot of humility that we are going to have to learn.

Be forthright about what we don’t know

And the other issue that comes out of that is that dealing with the notion of uncertainty. We've felt that we've had to be more certain than maybe we wanted to be because we so much wanted people to take fundamental minimalist steps to save the lives of others that we encounter: wearing a mask, common sense.

I mean, just come on. You know, how do we tell you to do simple things that at least give us a chance to win the war? But when we are uncertain, if you put uncertainty into the conversation, then people will latch onto that uncertainty and certainly not do anything. And so all of a sudden you're kind of harmed by being vulnerable.

On the other hand, if you're not expressing your uncertainty, if you're not expressing the truth of what we know and don't know, then you lose trust. And so these are the kinds of interesting challenges. I'll tell you what I'm really excited about, is these are tough challenges, but they're challenges worthy of people who have taken a mission as physicians.

We don't like unsanitary water. We don't hate unsanitary water. We just need to deal with it. We don't like unhealthy air. We have to deal with it. We don't like any of the things that are happening to us, but we certainly don't have the luxury of being frustrated by the challenges. At the end of the day, the only thing that matters is whether we live or die, and the quality of that survival. That's only thing that matters.

So no matter how frustrating and chaotic these times are, at the end of the day, our frustration, our irritation and unwillingness to change how we operate, none of those things are important when you weigh them up against the consequences of failure.

Emily Holwick: It's such a great way to put it into perspective.

You've shared so much incredible information and so many great things for our listeners to be thinking about and implementing in their own practices. And before we let you go, I just want to ask you to share one or two main points (I know it's hard to summarize all of this information), one or two main things that you really want our listeners to take away from this conversation today.

Dr. Reed Tuckson: Number one is that we as physicians are part of a much larger ecosystem, all of which, no matter what discipline or no matter what facility or kind of facility you work in, that all of us are facing the same kind of challenge and that the only way that we will win this is if all of us work together to do the things that are necessary to be done.

This is about scale. It is about leverage and it is about time, and we have to make sure that we are all doing the right thing. We have to make every encounter with every single patient and/or consumer, a trust-enhancing one and not a trust-eroding one. Then the second thing we have to do is respect the people that are in front of us, whether that is the patient in front of us—whether it is the community group in front of us—we have to respect the people and respect people who we may not agree with.

We have to learn to listen. Listening and respecting who and what they are, how they come to where they come from, even when we disagree, and then be willing to take the time to get to a place where we can have a shared vision, a sense of harmony around not only our goals, but the information and the evidence necessary to achieve those shared goals.

This will take time. And so we can't be in a hurry, but we also cannot be lethargic.

Emily Holwick: Certainly a worthwhile cause. Thank you so much for joining us and for sharing your insight and the important work that the Coalition for Trust in Health and Science is doing, and the AAFP is proud to continue to be part of that mission as well.

And to our listeners, if you'd like to learn more about the coalition and the AAFP's wide range of resources on vaccines, from CME to conversation guides and patient education, we have links for you in the show note.

If you enjoyed today's episode, let us know by dropping a line to aafpnews@aafp.org.

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