The Paradox of the Informed Patient

(This is an unedited transcript. For accurate quotes and presentations, please refer to the full-event video.)

Dan Finke:

The topic of the voice of the customer and the future of healthcare and patient engagement is an important one. We’re hearing from our customers that they want choice, they want convenience, and they want solutions that fit into their everyday lives. So meeting a patient’s needs can not be achieved through just a single location, or even a single delivery method. We must meet people where they are, and we need to provide choices. A great example of that is how CVS Health are connecting patients with new products and services that combine both the virtual assets and physical assets into touch points, to really meet a patient’s healthcare needs. So connecting innovations like our Health Hubs with some of our digital tools, health actions like our Aetna Advice product, and even our virtual health capabilities provide that choice and convenience. And that’s what we’re hearing from our customers that they are looking for. As a result, even of the pandemic, it’s become increasingly clear that we need to support policy that promotes access and choice, and telehealth is a great example of that. I appreciate the opportunity to share my thoughts on this important topic.

Kathryn Martucci:

Hello, and thank you for joining the fifth session in the Alliance’s 2020 Signature Series Summit on the Voice of The Patient. I am Kathryn Martucci, Director of Policy and Programs for the Alliance for Health Policy, and for listeners who are new to the Alliance, welcome. We are a non-partisan resource for the health policy community dedicated to advancing knowledge and understanding of health policy issues. Throughout this three-day event, we are examining how the patient voice is collected, how it supports shared decision-making, and how does leverage and policy translate in efforts to improve patient experience and build healthier futures.

Kathryn Martucci:

I want to take a moment to thank our 2020 Signature Series sponsors. We appreciate their support in making this summit happen. And I also want to highlight our final session of the summit, which will take place at 12:00 PM today. And that will be a panel discussion on how patient input is collected and used to drive a culture of patient centeredness, and co-design a better healthcare system. And you can also find recordings of previous sessions from throughout the week on our website.

Kathryn Martucci:

We also want you to be… Just depends in this topic discussion. And so please tweet your questions to the handle @CRMHVanderbilt, and use the hashtag #AHPsummit20 to engage in this conversation. And now it is my pleasure to introduce our keynote speaker, Dr. Derek Griffith, Director of the Center for Research on Men’s Health, and professor of medicine, health, and society at Vanderbilt University. Dr. Griffith’s program of research focuses on developing and implementing behavioral and policy strategies to achieve equity and health and wellbeing by race, ethnicity, and gender. He has collaborated with colleagues around the world to address institutional racism in public health departments and systems, to pursue men’s health equity, and to promote the health and wellbeing of African-American and Latino men through policy and precision lifestyle medicine interventions. In recognition of his work, Dr. Griffith won the Tom Bruce Award from the community-based public health caucus of the American Public Health Association. And given those accolades and expertise, we are so grateful to have such an accomplished researcher and speaker here with us today, and we’re eager to hear your remarks. So without further delay, I will turn it over to you, Dr. Griffith.

Dr. Derek Griffith:

Thank you very kindly, excuse me. I appreciate the introduction and the opportunity to join you today. Without further ado, let’s just jump right in.

Dr. Derek Griffith:

Next slide. So let me first acknowledge first our funders, the Robert Wood Johnson Foundation, American Cancer Society, and NIMHD. The Robert Wood Johnson Foundation project that we’re actually funded to do now is actually specifically on this issue of trust in healthcare. And so we’re specifically looking at, myself and my principal investigator, Dr. Consuela Wilkins, are trying to understand healthcare and trust in healthcare through the lens of African-American men’s experience.

Dr. Derek Griffith:

I also want to acknowledge the passing of Bill Jenkins, who I’m going to talk a bit about. The US Public Health Service study of untreated syphilis in the Negro male, better known as the Tuskegee syphilis study. And he was one of the key figures in helping to call into that study. And so he was an important figure in that, an important mentor of mine that we lost unfortunately last year. But I do want to acknowledge him because his work, this presentation really builds on some of his work as well.

Dr. Derek Griffith:

Next slide. I also need to acknowledge my team back here at Vanderbilt University. They helped me make sure everything is possible and everything that makes me look good, so I appreciate them as well.

Dr. Derek Griffith:

Next slide. Okay. So let me jump right into this idea of, are they trustworthy? And by that, the reason that I was asking that question, is because that’s honestly one of the big questions that patients, when they go to the doctor, really have. And we know that just as a foundation, patients need providers, they need doctors, they need nurses, nurse practitioners, and so forth, and healthcare institutions for them to be optimally healthy. They need to be well-informed. So with this idea of patient centered decision-making, we know that we value people being well-educated and well-informed as patients, and just as loved ones of patients who are trying to help their family members and their loved ones to be as healthy and well as possible.

Dr. Derek Griffith:

But the challenge that we run into is what happens when you’re a well-educated consumer and you learn that healthcare institutions, certain providers, perhaps, but certainly different organizations or the larger institution, not specific to any particular organization or hospital system or healthcare provider, has done things that are not necessarily the most trustworthy? And so how do you factor that information into the decisions that you’re making when you’re seeking healthcare, when you’re looking at healthcare, when you’re trying to decide how to follow advice and prescriptions of your physician and your healthcare providers? So that’s what we’re going to really grapple with today.

Dr. Derek Griffith:

Next slide. So lack of trust has often historically been framed as something that needs to change within the patient. And what I’m going to argue today is that we need to put the onus and the responsibility on providers and healthcare institutions to demonstrate they’re trustworthy. Not try to change patients to be more trusting, if the people that they’re supposed to trust are not necessarily trustworthy. Now, clearly I’m not saying that all providers, and very few providers are untrustworthy, and certainly most healthcare institutions do anything that they can to make sure their patients have the best outcomes, the best quality of life, the best care that they can possibly provide.

Dr. Derek Griffith:

But we also know that over time, these things have happened where healthcare providers or healthcare institutions have not necessarily done their best, or have done things that have led to negative outcomes, or presented things that are not necessarily giving people all the most accurate information to allow them to make the best decisions for themselves. And that they withheld information or not presented in such a way that people could share in that decision-making process quite in the same way that we’re ideally thinking about it. And so the question is, how do we navigate that, and what do we do with that? And that’s what we’re going to grapple with a bit today.

Dr. Derek Griffith:

Next slide. So, today, my task is going to be to talk about trust and other key terms. Some of which I’ve already mentioned, trustworthiness… We’ll also talk a little bit about mistrust and distrust and some others. Explore the legitimate reasons that patients may not trust healthcare providers. And again, this is just to think about the basic things that these are. One of the challenges is, and this is why I called the presentation the paradox, is because if you’re an educated patient and you find out information, usually the information that we talk about is something that’s supposed to help you make an informed and good decision. But if the information that you find out is negative, that makes it more challenging to figure out how you’re supposed to utilize that information. And particularly if it calls into question whether or not you should trust that particular provider. And so the last point that we’ll grapple with today is, how do we help providers and organizations become more trustworthy, rather than blaming patients for their lack of trust?

Dr. Derek Griffith:

Okay, next slide. So just to make sure we’re on the same page as a starting point, trusted is the belief in someone’s competence or an organization’s competence to complete a certain task. Very basic.

Dr. Derek Griffith:

Next slide. And we know that trust in any kind of relationship or any kind of space in context takes a long time, often, to build, but if you break trust or call people into question about the trust, it can take a really long time for those things to be repaired. And sometimes they can never be repaired, and completely undone.

Dr. Derek Griffith:

Next slide. This idea of patient trust in healthcare is not a new phenomenon. It’s actually been something that, in the context of healthcare, has been an issue since the early part of the 20th century. And actually one of the more famous pieces that’s in The Journal of the American Medical Association was written by Francis Peabody, who was a physician and medical professor who spoke to one of the classes at Harvard of medical students. And was talking about how important it was for them to deal with, grapple with, and engage their patients, in dealing with the issues of trust, and just how personal it was to have a relationship with their patients. And that it was important to build that relationship of trust.

Dr. Derek Griffith:

And the relationship that a patient has with the provider is really foundational to, are they going to trust them and are they going to follow the advice that they’re giving? Because ultimately a lot of the things that are going to help people become healthier and more well are things that necessarily have to be done outside of the healthcare visit, outside of the healthcare system, and in the context of their daily lives. So they have to trust and then translate that information and take it with them, and understand it in ways that are really important for them to be able to apply it in their daily lives.

Dr. Derek Griffith:

Next slide. The research connecting trust and health care professionals and people’s health is quite robust. This is just one example that shows that. It’s a review article and meta analysis that basically shows that there is a lot of research that is in this area. And it just highlights the importance of showing that it’s not just for people feeling better in their satisfaction. There actually is a relationship between whether or not you as a patient can trust a provider and some of your health outcomes. And so those pieces are really important, both as it relates to engaging in healthier behavior, having fewer symptoms and having better quality of life, and again, wellbeing, and that sort of peace. That’s not just about health outcomes, but it’s also about an overall approach to health. That those kinds of things can be improved by having a better and more trusting relationship with your healthcare providers.

Dr. Derek Griffith:

Next slide. And one of the pieces that, again, in this work has been really important, is how do you decide who’s trustworthy? And that it’s important that you should only trust those who are actually truly trustworthy. And if you think about that in the context of healthcare, the reason that becomes important is because if you put your trust in providers, and institutions, and people that aren’t really worthy of your trust, it can color, or shape, or negatively influence your relationship and your willingness to seek care going forward. And so if we think about a lot of the challenges that we have, and a lot of the things around mistrust, distrust, have often been talked about in the context of race and ethnicity, and even other populations.

Dr. Derek Griffith:

And we’ll talk a bit about that in just a minute, but that there are legitimate reasons why these populations have lacked trust in healthcare system and in providers and so forth. And so that sense of betrayal that can come from their trust legitimately being violated, and their actually having legitimate reasons as to why they’re questioning the accuracy of the information. And it being rooted in something that is real, tangible and has historical evidence, is something that we have to grapple with and take seriously into account.

Dr. Derek Griffith:

Next slide. This is from some of the work that I’ve done in the past, and we actually interviewed African-American men about why they don’t go to the doctor. And one of the things that was fascinating about that conversation, and those series of focus groups, was really that one of the things they talked about is who did they trust when it came to healthcare information and healthcare seeking. And the short version without reading the quote is just that sometimes if what was counterintuitive for us was if the men actually went to the doctor and the doctor told them something that was not consistent with the way that they understood health and wellbeing, or understood what they should do. And particularly if it conflicted with something that was a loved one, somebody that they trusted over the course of their lives, whether it was a spouse, a partner, a parent, whoever that might be, that they were more likely to trust that person, even though they may not have any medical knowledge or background whatsoever.

Dr. Derek Griffith:

And the reason was because they know them, they know that those people have their best interest at heart, and they know that they love them, and they’re interested in them, and they’re interested in their overall health and wellbeing. Even though the provider has more education, more training, and this is what they do. If you are skeptical, you’re going to trust the people that have your best interest at heart, even if they’re not as well trained in that particular area.

Dr. Derek Griffith:

And so the only way that providers actually gained credibility when there was a difference in opinion, is if they were able to elicit from the patient, what were some of the things that a loved one had told them, that may not be accurate, but it’s something that they also thought about. If they address those kinds of questions about things that they may have been told, then they actually showed what was a plausible reason as to why that information, while it makes sense colloquially, was not actually accurate. That those kinds of things were really important for them to address. And that actually is a way that providers gain credibility when they were actually talking to their patients. And so it’s really recognizing that those relationships that people have outside of healthcare are really important for understanding how they’re going to engage with healthcare systems, and who they’re going to see as trustworthy, and why.

Dr. Derek Griffith:

Next slide. So I want to make a distinction. This is going to sound very academic and it fits why I’m an academic, but it is an important context to think about some of the semantics of different terms. We tend to use the concept of trust and low levels of trust as two things that are just polar opposites. But then you also see a lot of synonyms, or we treat them as synonyms, like distrust and mistrust. And what I quickly want to just do, again, it’s going to sound a bit like it’s either nuances that don’t necessarily matter, but they’ll matter because if you’re trying to address these issues, you need to know concretely what you’re addressing. And so if trusting in a particular provider means that you have faith in their confidence to do something. And then you have lower levels of that. That’s one thing that you can deal with by showing that you’re more competent.

Dr. Derek Griffith:

If you distrust someone, then that means that that’s usually a characteristic or something that you’re attributing to an individual, a provider, an organization, an institution, that presumably that organization, or that object, has done something to call you to question what that particular unit or that particular person or organization, and what have you. That means you have to do something very specific to undo that level of distrust. You have to figure out what is it about what’s happened that you have to then account for and deal with very directly, as opposed to treating this like it’s a general sort of issue.

Dr. Derek Griffith:

Next slide. And so there are different stages that you can go through with distrust. And just thinking about the barriers to somebody trusting, not being able to follow recommendations and guidelines as because of a level of distrust. And at first it just becomes doubt, and you start with this idea of maybe I’m a little bit skeptical and suspicious of things. And then you get to a bit of potentially anxious, and then you start to fear whether or not this is actually going to happen, or whether or not the person is treating you with the best possible care and information. And then you move to potentially self protection, which can lead you to do things that are, again, counter to what the provider is suggesting, but nonetheless are you seeing it as potentially in your best interest.

Dr. Derek Griffith:

Next slide. Mistrust is actually more of a general sense of unease or suspicion, where there’s not a specific person/object/organization that you’re tying it to. And so the point of this is, this is where things like the Tuskegee syphilis study becomes such an important context for understanding health and wellbeing, not just for African-Americans and certainly not just specific to African-American men, but nonetheless it’s something that is important for all of us to understand who are well-informed about these kinds of issues. And so it leads to more of a general skepticism about whether or not the information that you’re getting is fully honest and fully transparent, and is comprehensive and complete.

Dr. Derek Griffith:

It can lead you to question whether or not these kind of historical experiences don’t require you to have full knowledge of whether or not they happen, or how they happened, and all that kind of stuff. They don’t require you to know the facts of it, but it requires that this information that gets passed down just cause you to be a little bit skeptical, suspicious, just in a very general sense. And again, it’s not because the individual institution or the individual person has done something, but it’s because you’re just coming at the system and at this particular experience of healthcare with a level of skepticism. And it’s a healthy skepticism, because it’s based in actual fact and knowledge that you actually know has really potentially happened.

Dr. Derek Griffith:

Next slide. And so, within the context of Tuskegee, and I want to use that, because that often comes up as the main example that people lean on. I want to talk about some of the challenges with Tuskegee, and how that study in particular has led to some of the righteous concerns that people have. And the legitimate concerns that people have about things like the COVID vaccines, and so forth, about some of the things that we’re grappling with today. Not just in the context of COVID, but more generally.

Dr. Derek Griffith:

Next slide. And so one of the key points is that you have to understand that the main thing that happened with the Tuskegee study is the design of the study was really to just simply… It was an observational study, which means that you’re just watching to see what happens. And you’re just spending the time, the people had visits to basically document what was going on. The men had visits to document what was going on, and they chose men in particular, simply because you’re looking at a sexually transmitted infection. And it simply is easier anatomically to see the evidence of the syphilis, because of men’s genitalia versus women’s. And so that was one of the key reasons why they ended up excluding women from the study, and ended up just having men in the study, that ended up being the longitudinal study that lasted for almost 40 years.

Dr. Derek Griffith:

The problem, though, was… There were multiple problems, but one of the key ones was the patients were being told that they were receiving free health care, and that they were this government study that was done by the US public health service, and that engaged a lot of their key institutions like historically black college and universities, black medical associations and so forth, that they were being provided healthcare. Even though a lot of the pictures, historically, and that I was even able to find, show them engaging with government doctors or doctors from the US federal government. Those weren’t the only people that they were engaging with, and those weren’t the only folks who endorsed the study,.the churches did and so forth.

Dr. Derek Griffith:

And so they weren’t getting free healthcare. They were being actively lied to about what they were actually receiving in the context of this study. So when people have skepticism or this mistrust of US healthcare and of things that the government is doing, as it relates to healthcare or institutions like healthcare, and they’re hearkening back to Tuskegee, this is the kind of thing that leads to mistrust. When people have actively documented that they were being deceived, that they were supposed to be getting healthcare, but they actually were not.

Dr. Derek Griffith:

Next slide. One of the things that’s important in that gets to be a bit of semantics, but it’s an important note is some people have tried to understand well, is it the fact that… It’s not really a question of whether or not people know the facts about Tuskegee. Some people have misunderstandings that they think that people were infected with the disease. They were actually not. And all kinds of other misconceptions about the disease. Those aren’t the things that necessarily lead to mistrust. The fact that it happened, the fact that what people do know about the study actually happening is simply the fact that it was only done with African-American men. All the African-American men were deceived, and they were told they were getting health care for this period of time. They were actively forbidden from actually getting care and treatment when it became available.

Dr. Derek Griffith:

And those kinds of factors, simply knowing those kinds of things was enough. In a study that Dr. LaVeist and colleagues did some years ago found that there was no relationship between actual knowledge about Tuskegee and whether or not people had this level of mistrust. And so it’s not about the knowledge specifically about the study, and what happened in the study, and those kinds of facts that’s really relevant. It’s simply the fact that people mistrust healthcare because of what’s happened in the past. And because they simply know that this particular thing has happened.

Dr. Derek Griffith:

Next slide. And si ut just highlights that when there are concerns about these evidence of mistrust, that people have legitimate reasons for actually questioning these kinds of issues. And even though, again, we can sort of treat them as though these abstract events just happened so long ago, but we know that there are actually things that have happened much more recently.

Dr. Derek Griffith:

Next slide. And so, because one of the other contextual things that becomes really important, if you think about things like the COVID vaccine and so forth, it’s not the people who are developing the vaccine who are actually going to disseminate it and deliver it. They’re going to have to… Patients who are going to get the vaccine have to work through institutions like health system, public health systems, like hospital systems and so forth, that the populations who are seeking care have to have a level of trust with. And so the distrust, as we were talking about before, of specific providers, of institutions, of types of institutions, that comes into play on top of the mistrust that may come from learning of, or knowing of, a particular history like a Tuskegee.

Dr. Derek Griffith:

So the distrust matters because you may, or your community or whoever group that you may be a member of, may have a level of a negative relationship or history with a particular institution. And that that may also affect your care and whether or not you’re willing to get something like a vaccine, or whether or not you’re willing to get consistent treatment and so forth.

Dr. Derek Griffith:

Next slide. And so when we did some focus groups and talked about it, when we see, again, people have legitimate reasons or concerns. Like are the folks who were making money off of a particular cure, a particular issue, like a vaccine. This was focus group data that was done before the vaccine about just research. And people’s trustworthiness about, sorry, the trustworthiness of medical providers and just medical care, what kinds of things influenced how much they trusted or didn’t trust the people that were providing care. They found that one of the concerns that people had is if they have some kind of competing interest, like making money, that that can be one of the things that would call into question whether or not folks are having their best interests at heart and are treating them with the best possible care. Or are they doing something else that may be a little… That may be worthy of having a lower level of trust?

Dr. Derek Griffith:

Next slide. And so, one of the things going back to specifically Tuskegee is the original study started in 1931, the longitudinal study, or study that lasted almost 40 years, started in 1932. The problem with Tuskegee, or a second problem with Tuskegee, was that when they originally started the study, there was no cure for syphilis. There were things that would help deal with the symptoms and so forth, but there was no actual cure for it. 1942, actually 1928, when they actually created the penicillin or they discovered penicillin, it was actually started to treat patients in 1942, largely in the military, but then also other Americans. And so the problem with Tuskegee was that they actually came up with something and they were forbidden to actually give it to patients as a way to actually deal with their symptoms. Because they were thought to be more valuable for being in the study than they were for actually treating their particular individual health and wellbeing.

Dr. Derek Griffith:

Next slide. And so the US public health service at the time collaborated with and worked with a really strong network of providers, whether it’s pharmacists, healthcare providers, physicians, and so forth to actively restrict people from who were in this study, the men who were in the study, from getting access to the treatment that would have actually cured them and killed the syphilis in their body. And they actually went through this very intricate process to make sure that they forbade them for, again, 30 years plus to gain access to those kinds of things.

Dr. Derek Griffith:

Next slide. So the problem, again, is it wasn’t just… And again, there are a lot of serious stereotypes and issues with the people who potentially led the study and so forth, and there are a lot of questions about it. But one of the other things that makes it particularly something to be mindful of is the folks who actually started the study actually were in part selected, according to some researchers, for their actual knowledge, history, and reputation of being committed to what at the time would have been the minority health or health disparities experts of the time. These were physicians and providers who actually were supposed to be the experts, and have the most expertise and interest, and had shown commitment over the course of their careers for treating and improving the health of, at that time, called Negroes.

Dr. Derek Griffith:

And so the fact that you had these folks who had the strong reputation, they worked at institutions that were reputable, and yet were doing things that we ultimately now look back on with a level of disdain and skepticism, should give us some pause. And again, put in the context of well-educated providers, I’m sorry, well-educated patients who know about this kind of history, it gives more credence to why they tend to be skeptical. Is that even people who supposedly have the best interest at heart in the populations that are trying to address these kinds of issues, in the past, have done things that are questionable and have led to very negative outcomes for those particular populations.

Dr. Derek Griffith:

Next slide. And so this idea of healthy skepticism is something that has been around for more than 50 years. And this idea of drawing logical and accurate interpretations from learning about institutions and a society that may not treat folks as equally as others, or as well as others, is something that has been around for more than 50 years.

Dr. Derek Griffith:

Next slide. And we know that particularly in the context of healthcare, that this has happened and that there are these racial and ethnic differences. The unequal treatment report that was done almost 20 years ago now was something that acknowledged these differences and actually systematically documented these differences. It was done by what was then called the Institute of Medicine and reviewed over a hundred studies to find this consistent pattern of what we see now as healthcare disparities.

Dr. Derek Griffith:

Next slide. And so it does call into question, and even at the time, they were surprised, or some of the people who participated in the study and pulled together this systematic review were surprised, at how people who we know have committed their lives and their careers to… And well-trained people who devoted their lives to trying to do these kinds of things, to improving people’s health and wellbeing. How is it that they are providing differential quality of care to specific population groups over time? And those are the kinds of things that we don’t have good answers for. We’re trying to grapple with it as a field, but we don’t yet have good answers for it.

Dr. Derek Griffith:

Next slide. And so again, the idea of groups with a history of experiencing things like racism and exclusion and discrimination being skeptical is something that we have to really grapple with and trust that those kinds of things are real and are things that we need to consider.

Dr. Derek Griffith:

Next slide. And it’s not unique to, even though I’ve focused on the experience of African-Americans and African-American men in this particular context, there are a larger body of work on medical mistrust that has looked at populations. Other populations, certainly there’s a lot of folks who’ve done work on the syphilis study that they did in Guatemala, where they were actively the US public health service apparently was actively injecting people with syphilis, so that they could, again, look at the natural history of it. Those studies have been documented relatively recently. We have these other studies that have done things that have looked at people who were otherwise now considered vulnerable populations or other populations, where there has been a lot of stigma, like our LGBTQ populations and so forth, where they have been systematically mistreated in the medical community.

Dr. Derek Griffith:

And so when they come to the medical care system with a level of skepticism, we have to treat that as though it’s serious and legitimate, and that they’re not just misinformed. They actually are accurately informed about these kind of concerns. And even for folks who don’t necessarily, aren’t necessarily thinking about this through the lens of systematic discrimination, distrust, and so forth, there are a lot of people who’ve had family members who have had negative experiences, and that we need to take that seriously into account.

Dr. Derek Griffith:

Next slide. And so, just to conclude, again, we talked about these different terms and concepts over, and why each one is important. We talked about some of the legitimate reasons patients may not trust healthcare providers and the fact that there are, if you understand history, you understand the historical context, these kinds of things are really important for us to think about. And that we do need to move the conversation from thinking about ways to improve provide patients being more trusting of healthcare providers, to helping providers and organizations that are providing care and providing services to be more trustworthy. And that that’s where we need to put our efforts going forward.

Dr. Derek Griffith:

Next slide. And that’s all I have. Thank you so much.

Kathryn Martucci:

Dr. Griffith, thank you again for joining us today and sharing your insights. I know we gave you a big undertaking to summarize such a complex and significant topic, but you of course did a wonderful job. And on a lighter note, got to love a good Looney Tunes [inaudible 00:00:34:31], so thank you for that too. And for those of you listening, please join us for our third and final discussion at 12:00 PM today. And also want to remind you that a recording of this webinar and additional materials will be available on our website. So thank you all and have a good afternoon.