Medical science has not fully recovered from the distrust that erupted among some segments of the public during the COVID-19 pandemic. Skepticism and misinformation about vaccines and other health matters are spreading. Can anyone help doctors and scientists build faith in medical expertise?
Reed Tuckson, MD, is trying. Tuckson is cofounder and chair of the Coalition for Trust in Health & Science, a nonprofit that focuses on “ensuring that everyone is empowered to make informed and personally appropriate health decisions … based on accurate, understandable, and evidence-based information.” (The AAMC is a member of the coalition.)
Tuckson recently spoke with AAMCNews about applying what has been learned over the past several years to responding to misinformation and distrust in medical science. He focuses less on specific tactics than on foundational strategies to address the relationship of health professionals, scientists, and academic medical institutions with patients and the public.
Tuckson has built a long career in medical leadership, including with the National Institutes of Health and the National Academy of Medicine. His perspectives are also shaped by his experience as commissioner of public health for Washington, D.C. Read his bio.
This interview has been edited for brevity and clarity.
The pandemic has receded, but there’s still so much distrust in medical science. We know that a confluence of social and technological changes fueled misinformation during COVID-19, but have we learned anything fundamentally about that distrust?
First, we have to remember that most Americans do not know a scientist. They do not understand the processes of science, particularly as science has become so much more complex.
Second, we’ve learned that there is this perception that elites, and especially health elites, are imposing their value system on the rest of society. While health leaders have an ethically and mission-driven preoccupation with preserving life and preventing suffering, these values might not be the number one priority in some communities. There are other considerations that may be more important, like the economic viability of the community, or kids going back to school. There is a sense that elites have inflicted their worldview on the rest of society.
And finally, many times elites have had the power of government intervention associated with their particular points of view, and that has been resented by many communities who feel that the relationship between elites and power is inappropriate and unhealthy. You put all of that together and we get to where we are.
What have we learned about how to deal with that distrust?
We’ve got to learn how to listen. We have to find mechanisms for listening and then for incorporating other points of view into our point of view.
We’ve learned that we are but one voice in the conversation, in the public discourse. We have to get comfortable with humility. So that when we take our expertise and deliver our knowledge into the hands of those in power, to determine [health-related] strategies going forward, we weigh the various priorities of the community.
And we have to be people who present themselves as deserving and worthy of people’s trust. Every person who represents the health ecosystem is duty-bound to conduct their affairs, as they work with a patient or a consumer, in a way that engenders trust.
If you're a doctor, how can you make sure that you are trusted in the community? For example, I wonder what you think of this observation by an ethics program coordinator at the New York University Grossman School of Medicine, which was recently posted at the Hastings Center:
“Folks in the communities I work in rarely see a doctor. They don't know how to trust medicine. They could if they heard from doctors, nurses and pharmacists working in their communities who are willing to speak outside the clinic. We need experts to be vocal and visible.”
This quote is important. Health organizations — hospitals in particular — have a fundamental responsibility for working with the community that surrounds the hospital to create a strategic, shared vision for health, for looking at how the community and the institution can work together to advance health. The clinicians need to be outside of the walls of the institution and in the community itself — having the conversations, doing the education, doing the listening, and trying to do, when appropriate, the convincing.
If you come back to the defining responsibility for the health professional, the patient/physician relationship has always been sacred. If your patient does not believe in science, if your patient does not trust you as the clinician or the institution, then the therapeutic relationship between the doctor and the patient is fractured.
We’re going to have to find a way to make standard the ability to understand how our patients think about these important issues; where they are on the trust or misinformation curve; what values are driving them to a place that may make them extremely distrustful of information, such that they may harm themselves because they will take inappropriate advice or fail to take appropriate advice. We have to do a better job of incorporating this into the conversation [with patients].
That brings up a challenge, doesn’t it? Let’s take the person you just described, who is skeptical of science, doesn’t believe in medicine the way it’s presented to them. Should the physician or academic medical leader not try to convince that person about the best medical evidence? If preserving the relationship is the main objective?
This question is so fundamental that the coalition has commissioned the Johns Hopkins Berman Institute of Bioethics and the Hastings Center to develop ethical guidance on questions such as, “What are the accountabilities of the health professional regarding how far we should go to convince skeptical patients and communities to accept our advice?” Especially when one consequence might be individual or even significant population-level death.
There are many difficult questions before our professions. For example, if a patient decides to harm themselves or others, the responsibility to intercede is clear. However, if a patient does not accept our therapeutic guidance, it may be more important to focus on preserving the relationship for the longer term. You can try to win a battle and lose a war.
Another example that will increasingly emerge concerns discussions with vaccine-skeptical parents. Let’s say that we disagree with the mother about immunizing her child from preventable childhood illnesses. The scientific evidence is clear on the safety of childhood vaccines and the consequences of not using them. It would be terrible for her to not get her child immunized. But if you destroy the relationship, and that same patient later needs to make a decision about whether or not to engage in chemotherapy for breast cancer, that raises issues. You’ve got a responsibility to look at the person holistically.
It used to be that the clinician could say to the patient, “This is what you need to know. I’m the person with all of the knowledge.” Today, in the world of the democratization of information, the patient is often coming to the clinician for their judgment, not for their information. It’s about how you make decisions in a climate of uncertainty. It has to do with risk assessments and how an individual’s values allow them to analyze the risks.
That argues for looking at our relationship with that patient as one that is increasingly conversation-based, value-informed, and guidance-based, as opposed to high-handed, finger-wagging based.
I’d like to get back to the concept of getting out of the clinic, working in the community. You seem to be telling the doctor and the scientist, “Here’s another thing for you to do. Go to community meetings. Get yourself invited to church groups or homeowners’ associations.”
We went into these professions with the moral responsibility for maximizing the health of every individual we touch. If we find that the climate of mistrust and misinformation impedes our ability to communicate the appropriate therapeutic regimen — so that the patient will actually follow it to protect, maintain, or restore their health — how can this be considered “extra” work? This is the work.
Does that mean that every clinician has to leave the hospital with their white coat on? It doesn’t mean that. It means enough of us have to do that.
If I’m a scientist or a dean, I might be worried about speaking out on any of these issues because of the political and public pushback.
This is a scary time, when the ability to speak freely based on expertise could result in harsh penalties to the individual and the institution, such as the loss of grants, the loss of professional stature, or other retributions.
I’ve seen many of my colleagues, members of faculties, who are terrified of engaging in the public discourse, because they feel that if they do that, not only will their grant be pulled, but that the university will be held to task for what the individual faculty member has said. I do not envy the burdens on institutional leaders.
That said, when death is a consequence of failure — whether individual deaths or large populations’ deaths — failure to speak out is morally reprehensible.
It is important that we all support science leaders in translating to the public the excitement of science; explaining why they spend so many sleepless nights, so many weekends, so many holidays in the laboratory; communicating that having an mRNA vaccine [for COVID-19], developed in record time, was one of the greatest [medical] achievements in human history. How can we turn people from saying, “You’re trying to kill me,” to “Let’s give a round of applause to the people who created something that saved hundreds of thousands of lives in the United States.”
Scientists are going to need to be seen in the community, and doing things to stimulate the minds of our children. We have got to educate the American people about the processes and mechanisms of science and its validation. We’re not doing a good enough job of it.
The modern interpretation of the Hippocratic oath, as I understand it, is that we have a responsibility to the vulnerable person, to translate a lifetime of expertise into service to and discourse with society. We have to build our skills in engagement, in trustworthiness, in countering misinformation throughout medical school learning, our residency experiences, and our continuing medical education.
How we engage with society: This is not a casual responsibility. It is a responsibility that takes commitment. That’s what we’ve got to reinforce now.
