Day 3: Co-Designing a Simpler System

Keynote 3 Transcript

(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.

Panel 3 Transcript

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

Mark Hayes:

As a non-profit Catholic health system, 2,600 sites of care across 19 states. It’s an honor to join you today. And Ascension is very proud to be a sponsor of this important event. At Ascension, we’re committed to our mission to provide spiritually-centered, and person-centered holistic care. Respecting the inherent dignity of all those around us is central to our values. That drives us to hear the voice of those that we serve, but we know we must do better. The U.S. healthcare system is complex, and it’s too hard to navigate, especially, for the poor and vulnerable.

Mark Hayes:

Hearing the voice of the patient is very important, and it’s especially important right now during this global pandemic, and the challenges that it is causing for so many. So, we’re looking forward to today’s summit. We’re hopeful for the future. We’ll continue to fulfill our mission to serve our communities. We thank you for being part of today’s discussion.

Rob Saunders:

Thanks for the introduction, and sorry for the technical glitch we had there. I’m Rob Saunders. I’m with the Duke-Margolis for Health Policy at Duke University. And I want to extend my welcome as well. And I’m pleased to be moderating this closing panel of the Voice of the Patient Summit, where we can synthesize what we’ve been hearing over the last two days, and also really think about how we can lead to systematic change. As I started to think about this panel, it occurred to me and that’s been almost 20 years since [inaudible 00:01:42] published its quality chasm report that called for a patient-centered healthcare system.

Rob Saunders:

We’ve made some progress since then, and we shouldn’t discount that, but we also have a long way to go. And I hope this panel today will really help us think through how do we take the progress we’ve done over the last 20 years, and really accelerate that? Think about how we advance in that journey into a more patient-centered healthcare system. I’m pleased to be joined by a pretty esteemed group of experts here who I’ll introduce. First, we have Ms. Hala Durrah, a patient-family engagement consultant, and she’s the founder of Patient Advocates Transforming Healthcare, PATH.

Rob Saunders:

Ms. Durrah is a nationally-recognized advocate, whose work stems from her experience as a mother of a chronically ill child. She’s an expert in patient partnerships. You can find her work on YouTube, and online, and weekly formats. And she served on a number of projects focused on patients and their measurement, patients’ safety, healthcare equity, patient experience, and more. Next, I’m pleased to introduce Dr. Sarah Scholle. She’s the vice president of research and analysis at the National Committee for Quality Assurance in CQA. She’s an expert in health services, and quality management, and she leads the National Collaborative for Innovation and Quality Measurement, and has led and participate in a number of projects to develop quality measures.

Rob Saunders:

She also leads a contract from the CMS Office of Minority Health on health equity, and a project to evaluate new tools for assessing social risk factors. And finally, I’m pleased to introduce Dr. [inaudible 00:03:27] Lansky who’s a senior advisor to the Pacific Business Group on Health, or PBGH. Dr. Lansky is a nationally-recognized expert in accountability, quality measurement, health IT, as well as, honestly, a really nationally-recognized expert in how to engage employers, and large purchasers in improving healthcare.

Rob Saunders:

He’s authored more than 30 peer reviewed papers on outcomes research, and quality measurement. And he holds a PhD from the University of California, Berkeley. So, welcome everybody. I want to kick things off by having each of you share your own perspective on why we think now is the time we can really advance toward co-designing a more person-centered healthcare system. And so, I’ll turn to everybody for a couple of minutes, just to give some brief opening remarks. And in the theme of focusing on the patient, Paula, I’d like to start with you.

Hala Durrah:

Thank you, Rob, and good afternoon to our audience today. I appreciate the opportunity to be speaking with my fellow panelists, and sharing my experiences on this very timely, and critical topic. Again, my name is Hala Dura. I’m a patient-family engagement consultant advocate based in the Washington D.C. area. As Rob mentioned, I did come to this work because of the experiences with my oldest daughter, who is a two-time liver transplant, and a bone marrow transplant recipient. So, as you all can imagine, that’s been quite a journey in the healthcare system as well as a place of where I’ve been able to really take that experience, and really utilize it in my daily work on a professional level as well.

Hala Durrah:

I’m going to ground my remarks today, and this conversation in a few different things. And I’m going to start with, certainly, we’ve made a lot of strides in patient-family centered care, and patient-family engagement, and trying to improve patient experience. However, we’re still not at that place where we have moved to fully engaging, and integrating the co-design, the co-creation, and equal and equitable partnerships. And I’m going to talk a little bit about that in my remarks today. Our system has really been one of the biggest barriers into integrating the patient partnership, family partnership, caregiver partnership, and community partnership in healthcare.

Hala Durrah:

Our culture has really supported the status quo, which really means that patients, families, caregivers, and communities are not really viewed as partners. And really more specifically as equal partners. I think we have a lot of room to grow and many opportunities. I think we have to start pushing ourselves past this concept of centeredness, and being patient-driven, and perhaps really look at more of that partnership, and beginning to recognize this as a community partner care system, whether you’re looking at the individual as a person, or as caregivers, or as whole communities.

Hala Durrah:

A number of ways we can do this, and I’m going to touch on three is looking at various opportunities. I think we have great opportunity in the realm of healthcare measurement, and really looking at patient-centered measurement where measurement is really driven by patients’ needs, wants, and desires. I’ve been really fortunate to be part of the team at the American Institutes for research as one of their patient partners around the work of patient-centered measurement. That’s really inspired and driven by five principles.

Hala Durrah:

Patient-centered measurement is patient-driven, holistic, transparent, comprehensible, and timely, and co-created. And utilizing these five principles as the foundation, we really can move towards a measurement system that is more patient-centered. And I do want to make the distinction that this is very different than PROMs, or patient reported outcomes. Those are a step in the right direction, however, they’re still systems-driven. They’re not really measures that have been co-created, or co-designed with patients, families, caregivers, and communities in mind.

Hala Durrah:

The second issue I would say is when we look at research as a whole, whether we’re looking at clinical research, measurement research, or any type of healthcare research, we really have to start embracing the concept of patients, caregivers, and communities being fully-engaged, equal, equitable partners in this work. And to engage them from inception to implementation and to completion. So, not bringing in that voice at the midstream, or at the end, or perhaps just as a focus group, or a structure interview, but really integrating that partnership as a equal member of the research team.

Hala Durrah:

Lastly, I would say that as we look ahead, I think there’s an opportunity for capacity building, and what do I mean by that? I mean that we should fully support patients, families, caregivers, and communities as equal partners, and really look to creating equity within the system, and bringing in more diverse voices, and not really beginning to say that we only want this particular voice, or only this voice is the easiest to engage, but creating opportunities, and supports that we can bring in diverse voices.

Hala Durrah:

And that’s going to include education, fair and equal compensation, supports such as childcare, transportation, training, and that’s on both sides because not everyone in healthcare also recognizes or understands how to partner with patients, families, caregivers, and communities. We have to allow the flexibility to meet people where they’re at. And that includes looking at how funders have to re-imagine the way we can really allow more flexibility so that we can have that full engaged partnership. We have to be more meaningful, and authentic, and really stop and say, “The days of volunteerism are not going to work if we really want to push the system forward, and really get to a place of equal and equitable partnerships.”

Hala Durrah:

We have to recognize we are building a different workforce, and we should certainly work towards building a society of patients, caregivers, and community members who really want to be part of the healthcare team. And I will end with this, we should not also make assumptions. Much of the public would love to be involved in different ways, whether that’s in their own care or the care of their communities. And we should really remember that as those of us who serve in leadership positions, we have the opportunity to really reach out and engage others. So, thank you.

Rob Saunders:

Thanks, Hala. Thanks for grounding us at the beginning. Dr. Scholle, I want to turn to you for your opening perspectives here. You’ve done a lot of work in thinking about patient reported measurement, and health equity. I’m wondering if you could give us a few minutes opening remarks.

Sarah Scholle:

Great. Thank you. And I appreciate the opportunity to be part of this panel, and part of this truly important discussion. So, in thinking about the question of why co-creation? Why focus on person-centeredness now? What is the real issue today? Well, we’re at a moment in history where inviting individuals to help design healthcare is critical, because of the great upheavals we’re seeing. First, there’s a social movement demanding our attention to racism, and violence against black people. The killing of George Floyd, and others has spurred as many as 26 million people to join protests across the country, and to put this concern front and center in our minds, in general, and in particular in healthcare.

Sarah Scholle:

The COVID-19 pandemic has changed how we live, and how we receive healthcare. And the dramatic shift to telehealth has made care more convenient for some of us with good internet access, and inaccessible to others. And furthermore, we’re increasingly understanding that social resources like healthy food, and stable housing, and safe neighborhoods are key ingredients to good health. And these resources are not equally shared as a result of historical racism, and they contribute to the inequitable impact of COVID on black and brown populations.

Sarah Scholle:

Secondly, the tools that we have for assessing person-centeredness in our healthcare system are really limited while care experiences surveys are well accepted as a component of how healthcare organizations are evaluated, and paid. The vast majority of these surveys are still completed using mail, and telephone surveys, and they’re completed by a small percentage of individuals. We find that response rates for commercial, and Medicaid health plan surveys have declined to less than 15% of eligible people.

Sarah Scholle:

So, this creates concerns about the generalizability of the findings, and the lack of timely feedback limits the usefulness of these data in helping us to improve person centeredness of care. And we have readily accessible technology that’s widely used in other industries that could help us get much faster, more targeted, and more actionable data, and feedback from individuals to really improve care. Third, we know how to involve patients, and Hala has talked a little bit about that. And in our work, in our research, and just observing organizations across the country, we’ve seen effective models for engaging individuals from the community in quality measurement, and quality improvement.

Sarah Scholle:

And that includes efforts as formal as governing boards in federally qualified health centers, community health teams. We see it in PCORI funded research work, where individuals are part of the research teams. We’ve also seen that people are taking the first step, and it’s really hard for healthcare organizations to take that first step of inviting people in. But we see the examples. And I’m pleased when I hear about suggestion boxes, or patient walk-throughs, and efforts to involve people in QI efforts. You need those first steps. But we also have examples of how to work with individuals design their own care about what matters most to them.

Sarah Scholle:

Our demonstrations have shown that inviting individuals and families to talk about what matters most is welcomed by patients whom have never been asked that before. And the clinicians appreciate understanding better what’s motivating their patients, and that individuals can work with their care team to create specific, meaningful, achievable goals that motivate them to work with their care team. And it motivates health clinicians to guide care. We have an example where a clinician told us, “By focusing on what was most important to my patient, I was able to help the patient stay out of the hospital.” Which was the physician’s goal, but it also helped the individual to achieve her goal, which was to have lunch every week with her sisters.

Sarah Scholle:

So, we need that synergy to happen in how we evaluate healthcare providers, and encourage them through measurement that is focused on what matters most to individuals. But to do this, we know that it’s going to take time and intention. It requires that we think about healthcare differently. It means different roles for individuals, for families, for clinicians in how they interact. It means different workflows, and ways to document care. And truly, it really requires new payment arrangements that reward organizations and clinicians for person-centered care. So, today more than ever, we need healthcare systems to take into account what matters most to the individual, including their history, their background, their preferences, their needs. And we have a lot of experience to guide us. We need a commitment to align healthcare to what matters most.

Rob Saunders:

Thanks, Sarah. That was very helpful for both giving us a sense of the landscape, but also a call to action for where we need to go next. And I’d love to explore more of those when we get to the questions portion. David, want to turn to you, and hear your opening perspectives here. You’ve worn a number of hats over the years, and would love to hear how you’ve been thinking about ways to improve and advance patient and person engagement.

David Lansky:

Thank you, Rob. Thanks for the chance to join the group today. I really appreciate the first question being about why now? Because I think as both Hala and Sarah have alluded to, this is not a new idea, or a new conversation. I think the Group Health Cooperative was founded in the 1940s based on a governance model of the members of the cooperative. We’ve had shared decision-making tools since the ’80s. In the late ’70s, we started outcome measures that Hala alluded to that were based on patient reports of their own symptoms and health. And none of these efforts have been sustained or systematic. None of them have really penetrated the behavior of the healthcare system. So, I think our discussion today is less about, is this a good idea? Is it important? Is it valid? Is it valuable? Then how do we move it forward?

David Lansky:

And it’s fortunate to have a policy context for that discussion today, because ultimately we’ve seen that of voluntaristic efforts by thousands of well-intentioned people haven’t really altered the course of the healthcare system. We have to recognize there are many stakeholders who do very well in the current environment with the current set of rules, and designed features of this system. And they are not going to modify the way the system operates easily. There’s a deep financial and institutional structure in play, and there are deep cultural norms. I think Hala alluded to that at the beginning, which reinforced the structures we have today that make it hard for patients to be fully represented in the way care is delivered.

David Lansky:

So, we have to recognize that the care system follows the money in this country. And I think Congress recognized that in passing MACRA, and saying, we wanted to migrate toward a value-based system that had rewards built into it, and to glide path for providers to move toward a value-oriented approach to how care is provided and evaluated. But the concern I have is that we only get there with actually rewarding value is if patient’s voice is represented in those reward characteristics.

David Lansky:

In other words, if we continue to reward the same behaviors the system has been built on, but label it something new like value, we don’t really change the system itself. So, the system has to be designed in a way that rewards the attention to the concerns that Hala and Sarah have raised. So, I’ll give you an example, in mental health, for many years we’ve had measures of health performance that have been tied to transactions, and processes like prescribing a particular drug, or having a follow-up visit after care has been delivered.

David Lansky:

Those utilization based measures don’t reflect whether people are getting the benefit of the care. Are their depression symptoms relieved? If you have a patient with a hip surgery, or knee surgery, can they walk again? Do they function without pain? Is their life improved? If all we measure are complications at the time of surgery, and reward performance in reducing complications, that’s a good thing, but it doesn’t tell us if we really improve the health of Americans. So, this is going to be difficult. It really requires changing how the health system interacts with patients, and involves using the patient’s voice in how care is actually managed, and delivered.

David Lansky:

The question you raised Rob about why now? I think, ultimately, it comes back to the unacceptable cost of healthcare in America. And not only is it insensitive to many patients and their needs, it’s incredibly expensive, and draining the nation’s treasury of dollars that could be used to advance other goals. So, we have to prioritize our investments in ways that get us to improve health for all Americans. And that could mean reallocating dollars from where they go now into other services, and resources in the community, like the social determinants of health we talk a lot about, and under-fund consistently.

David Lansky:

So, I think many of you are familiar with Michael Porter’s definition of a value-based healthcare system, which says that value is defined around the customer. And in a well-functioning healthcare system, the creation of value for patients determines the rewards for everyone else in the system. And value is defined by outcomes relative to costs. So, we have to move toward a healthcare system that reduces the attention on measuring processes, and utilization, and instead measures whether people are getting benefits from the healthcare system. If we want a healthcare system that improves the health of the nation, we have to measure health. I think that would be a fundamental policy shift that would redirect the attention of everyone in the system toward improving patient health. Thanks.

Rob Saunders:

Thanks, David. And thanks to everybody for those thought-provoking perspectives to help start us off. I want to move us into deeper discussion. And I’ve got a list of questions here that I’m excited about asking, but we also want to make sure this is interactive. So, if you’re in the audience, feel free to submit a question to us, and we’ll make sure that we start to bring it up. Just for quick instructions, if you look at your screen, you should see a dashboard at the bottom that has some icons. And one of them has a true speech bubble icon labeled Q&A, and you can use that. And that will, through a series of technological means, get to me, and I’ll be able to bring it up in discussion.

Rob Saunders:

So, while we’re waiting for those questions to come in, why don’t I kick things off? One of the topics that’s come up repeatedly over the last two days of the summit, and frankly, has come up for the last 32 weeks [inaudible 00:22:50] COVID-19. And so, one of the questions I want to pose to this group is really thinking about how patient engagement has changed and been affected by COVID-19. Has the pandemic really changed how we can connect with, and engage patients, and also their support systems? Hala, I’d love to kick things off with you, and then turn to others. So, would love to hear your thoughts here.

Hala Durrah:

Sure. So, I think the understatement of the year would be that COVID has not affected patient engagement. And it has at every single possible level. From a personal level, obviously, patients, families, caregivers have been impacted by not being allowed “into the healthcare systems” as COVID precautions have been taken. So, that obviously has been an immediate impact of COVID. And that is a huge impact, particularly, for those who are very dependent upon caregivers for various reasons. For those of us who may come from communities of color, minority communities, marginalized communities, not having a person who could also support our voice in the healthcare system is quite traumatic to say the least. Certainly, the stories we’ve heard of patients who have passed away alone in their hospital rooms has been quite shocking, disturbing, and heart-wrenching.

Hala Durrah:

The fact that we have patients, and families, and communities who do not want to go back into any healthcare setting. And so, that’s greatly impacted primary care, whether we’re looking at [inaudible 00:24:47] preventative, wellness visits. I mean, it’s just had such a tremendous impact on every individual, and community in the United States. Now, if we’re looking at patient-family engagement from the perspective of those patients, and families, and caregiver leaders who are engaged in healthcare systems, whether serving on Patient-Family Advisory Councils, or different boards and committees, again, they’re impacted.

Hala Durrah:

They cannot go obviously in-person for meetings, and they have to switch to virtual. Well, virtual works if you have the technology, the internet access, but if you do not have those two things, then you no longer can be engaged. And we’ve already had this issue within patient-family engagement where being able to represent diversity of voices has been a challenge because of some of these barriers. And now, we have obviously the additional barrier of COVID-19.

Hala Durrah:

And so, I think, at least from my perspective, from my colleagues in the field, many Patient-Family Advisory Councils are not functioning, currently, which means many of the decisions, the policies being made at the healthcare system level no longer have that voice being made at the board level, being made at committee levels, and certainly in different policy circles. So, we’ve certainly taken many steps back. And it will really require us to reimagine how we move forward during a pandemic, and ensuring that that voice is still there, still upfront and present.

Hala Durrah:

But that’s, again, going to be pushing at that culture lever saying that, what we had before was okay. Many of us say we certainly don’t want to go back to this. So, we’re hoping this is an opportunity to really, completely re-imagine the system, and look at new ways to approach engagement, and really get to that place of partnership.

Rob Saunders:

Thank you, Hala. David, Sarah, would you want to jump in on this question as well?

David Lansky:

Sure. I’ll just make one comment that’s actually in a positive vein. I think the shift to telehealth and tele-visits, obviously, raises some of the risks that Paula alluded to that some populations might have difficulty with access to the technology and so forth, but there is some evidence now that it’s actually expanding reach as well. And the prevalence, the ubiquity of smartphones, and other telephonic means of access is beginning to create an opportunity to have a two way connection with the patient wherever they are. And I have one example, we do a lot of work collecting outcome measures from patients, as I mentioned earlier.

David Lansky:

And there’s a project and article, I think, it’s in the citations for today that Montefiore did in the Bronx where they took their depression care model, the behavioral health model into the community with an app. And the app has a lot of great features on it, of course, including collecting data on how patients are doing with managing their depression, and their mental health issues. And that’s a population that was, I think, 59% on Medicaid, 74% either African-American or Hispanic. And they had very high engagement rates, very good ability to get information from patients and share information with patients.

David Lansky:

So, rather than all the barriers that exist to coming in-person to a visit, which often have its own challenges, by using the new technologies, and having the pressure of this new situation to force organizations to expand their outreach into the community, and use these new technologies, at least in this example, I’ll actually raise as an opportunity for more direct connection in real time with their patients.

David Lansky:

One other flip side of this, however, [inaudible 00:28:48] a very important question on these outcome measures about whether people are reporting a greater risk of suicide. And it’s very worrisome to be collecting an item like that without a direct relationship in-person with a patient. So, this has raised a different kind of problem that by moving to a telehealth environment, very sensitive topics are hard to handle with the dangers of not being in a close proximity to a patient. So, there are multiple difficult and interesting challenges that this is raising, but some of them may have some positive opportunities.

Sarah Scholle:

And [inaudible 00:29:26] just to build on David’s comments. With telehealth, there really is an opportunity. We do work with individuals with serious illness in older adults. And so, actually the use of the technology in some ways creates that access, and also involves family caregivers in discussions in a way that’s more convenient for the individual, and based on the preferences of the individual and the family for doing that. So, there are potential upsides, but it’s going to be critical that we think about how we make those opportunities available across the board, given the concerns about access. We work with a community health center that had Zoom all available, but for their primary care visits and behavioral health visits right away, but their clients weren’t able to take advantage of it because they don’t have data plans that are sufficient. They don’t have internet capacity.

Sarah Scholle:

So, if we’re going to move to this world of telehealth, we really need to understand how we can use those apps, and make them available, and the infrastructure available, but also think about what it means for communication. Just as David said, and Hala said, you really have to think about this as a new way of interacting. And there is some potential and some concerns. So, I think, we need to embrace it, and figure out how to solve for those.

Rob Saunders:

Absolutely. And Sarah, that’s a great lead in to another question here. And all of you noted this in your opening remarks that one of the challenges we’ve seen with COVID is that it’s exposed existing disparities, and inequities in the healthcare system. And the social movements this summer have further shone a spotlight on these inequities. So, what can we do using the tools for patient engagement, the push toward a more patient-centered health, and a person-centered healthcare system to help make sure that the post-pandemic healthcare system is more equitable? And Sarah, I might start with you given your last remarks. Are there a couple of things that we should be starting on to help improve equity right now?

Sarah Scholle:

Right. Great question. And obviously, the first step is really understanding you can’t have high quality care without having care be equitable. But the availability of information to help us understand to what extent is care equitable is really limited. And so, I do think we’re seeing states begin to look at stratifying data, not just based on race and ethnicity, but also considering social determinants. And I think that’s probably important for us to have as structures for understanding what groups might be at risk of poor quality care. And I also think there’s an opportunity for us to really rethink how we think about asking people about their care of getting information, because right now our surveys of care experiences are just the general population. They’re not targeted to people with complex healthcare needs.

Sarah Scholle:

They’re not targeted to different racial or ethnic groups that might have particular concerns. So, there’s opportunities for us to really think through what’s the best time to understand whether care is person-centered, and not just for some people, but for the different groups of people that might actually have a harder time, have less trust in the healthcare system? So, I’m not going to fill out my survey because I’m afraid of what people are going to say or use that information for. I’m not going to talk about, I’m not going to fill in information about my race or ethnicity, because I don’t know how that information is going to be used.

Sarah Scholle:

So, there are some real challenges here, but I think opportunities for us to actually focus our measurement attention on these issues of equity in a way that can actually drive improvement, and across the board. We’re definitely seeing that health plans, and healthcare systems are paying attention to these issues, and they saw it as part of their value equation. And I think we need more information to help guide that work.

Rob Saunders:

That’s helpful. Hala, I know when we talked earlier, you mentioned some thoughts here. We’d love to hear your perspectives.

Hala Durrah:

Sure. So, I think at play here is a juxtaposition, and the interconnectedness, and interdependence of a few things, and mostly around policy, politics, and power. And that really is an important component to understand in this work. And I think that there’s a few things given that we’re having this societal discussion around racial injustice, structural racism, and equity. And I think part of that is really acknowledging that power principle that is part of this equation, and who holds the power, whom allows others to be at the table, and makes those decisions.

Hala Durrah:

And this week on a web series that I host on different healthcare topics, this was our topic. And we really dug in deep into it. And we made a few, pretty bold statements, which were, if we really are going to engage patients, and families, caregivers, and communities in this work, those whom serve in leadership positions have to make equity a number one priority, and understand their role in holding power over whom gets to be at that table, whom gets to be on that team, whom gets to be on that committee. And sadly, I think people don’t recognize the weight of that power, the need to share that power, and to make space for everyone at the table.

Hala Durrah:

And so, we have to really start understanding, and acknowledging that in this work. And that’s how we really get to that notion of partnership, of co-design, and really hearing the voices of all in this discussion. And so, I think beyond the statements that so many different organizations, and healthcare systems put out around diversity, equity, and inclusion, we have to recognize within each one of us what is the power we hold? And what do we have power to change?

Hala Durrah:

How can we begin to bring in more voices? And I think we really have to start pushing ourselves. And that’s going to require some very, very uncomfortable conversations. And we have to start getting used to being uncomfortable. And many of us now in this work say, “If you’re comfortable in this space now, you’re not doing something right.” And so, I think that really has to be the core of any discussion. And certainly, I can give many different examples of that, but I think that is where we have to start pushing ourselves more. Are we truly making space? Are we truly sharing power? Do we acknowledge and recognize that we have not kept a balance of power in this equation, particularly, when we’re talking about equity?

Rob Saunders:

Thank you, Hala. And in fact, not only do you answer the question I posed, you looked ahead at one of the audience questions, which specifically ask about given the limited progress to date, what can we do to change the power dynamic between patients and the healthcare system? So, I think, we appreciate your being able to address both of those topics there, both of which are important. Since we also are talking about levers to make change, one of the levers that was brought up in the opening statements was about payment, and the role that money can play in changing behavior.

Rob Saunders:

One of the challenges that we’ve had to date in these types of payment models like alternative payment models is we haven’t necessarily had measures in place that have been able to serve as that North Sitar to make change. David, you mentioned this in your opening remarks the challenge in getting the right measures here, as well as the challenge to leverage those tools behind value-based care, and the like. I’m curious from your perspective, are there some immediate next steps that we can take here to improve alternative payment models to help them drive a more patient-centered healthcare system?

David Lansky:

Yeah. Thanks. Let me begin that by building on where Hala just took us. I think in terms of equity, the measures that we use as part of payment methods don’t have to be derived from the established, fairly old set of claims-based, and process-based measures. There are methods to develop measures, and there are measures out there that reflect genuine patient input, including from diverse populations. And it made me recall, in the mid ’90s, we developed a set of outcome measures for HIV/AIDS patients that were based on a dozen meetings, and focus groups with groups of patients all over the country from many different parts of society who had very different and difficult experiences with the healthcare system. And their experience drove the design of the measures. We asked those patients, what does quality mean to you when you’re receiving treatment for HIV and AIDS?

David Lansky:

And they structured a way, laid out a number of characteristics of good quality care. And then, we went back to the physicians, and the researchers and said, “This is what patients need, and want from the healthcare system.” And that was a dialogue that was very productive. It wasn’t an argument. It was a dialogue. And the clinicians really heard what the patients were telling them. And then, the patients, of course, were very interested in what the clinicians thought high quality care was.

David Lansky:

So, there is a way to get to outcomes-based measures that reflect all of the needs of all of the diverse kinds of patients we serve. To your question, Rob, the risk has been that we have many mechanisms for bringing measurement into value-based payment. We have the MACRA APMs, we have CMMI demonstrations, we have managed care contracts. We have ACOs that have measures. We pay for performance programs. There’s a dozen different platforms in which payment is tied to measure and quality.

David Lansky:

The problem is we’re measuring the wrong things. So, what we have to do is use those mechanisms, but insist that they measure health outcomes, and the kinds of domains that Hala and Sarah have mentioned that we have historically not measured, patient engagement, shared decision-making, whether the patients’ values are honored, and respected, and so on. So, the mechanisms are there. What we have to do is make it much easier, which means making the library of measures available. Many countries all over the world are doing this already. It’s our country that has been the biggest barrier to adoption. The second thing we have to really talk more about is data infrastructure.

David Lansky:

It’s very difficult right now to acquire data for patients, and massage it, and use it in a systematic way. And that’s something that the federal government through ONC and CMS go a long way to improve if they focused on it. I really want to support Hala’s point [inaudible 00:41:28] leadership. This will only happen if public policy leaders say, “This is how we’re going to reward healthcare. And we are going to insist that public payment programs use these measures to reward performance.”

Rob Saunders:

[inaudible 00:41:41]. (silence). Looks like somehow I got [inaudible 00:42:04].

David Lansky:

Now, try again.

Rob Saunders:

Right. I’ve got it now. Okay. Great. All right. Well, thanks, David. And Sarah, I was going to turn to you. You’ve done a substantial amount of thinking on PROs, and on sorts of measures here that could be included to make our payment models more effective, and encouraging a value-based care system that focuses on patient engagement, but welcome your thoughts on the next steps that we can take to make that type of change.

Sarah Scholle:

Right. I’ve been working on ways to measure outcomes for different populations, people with depression. Right now, we’re working on work with people with serious illness, and functional disabilities. And we’ve actually created a way of measuring what matters most to individuals. And so, we’ve got the measure, but the problem is how do we create the infrastructure, and the will to do it? And it will take many of the changes that we’ve talked about here. So, we need a payment model that rewards it, but payment model needs to understand that there’s a roadmap for adoption that will require thinking through workflows, and data tools that will make this easy to collect data once and use it for multiple purposes, so that we’re not increasing burden on individuals, and also not asking different questions at different times, and having a panoply of data, but not much information about where to go.

Sarah Scholle:

And that requires change management in the care system that involves, as Hala said, this is a new role for individuals and families. It’s a new role for clinicians. And so, you have to really think through that process of change that will allow you to measure once, use the information to guide self-management, to guide the care plan, to guide quality improvement, and to be available for evaluating, and use in accountability and public reporting, so that people know what good care is, and where to find it. So, I think all of those pieces need to come into play. It’s not an overnight change given all the individuals’ institutions, and have to be part of these changes.

Rob Saunders:

Thanks, Sarah. And a question from the audience we’ve gotten in is about social determinants of health. And we know there’s been a lot of activity writ large on both recognizing social determinants of health, but also thinking about how we can use the healthcare system to help improve on social determinants of health. In our home state of North Carolina, the North [inaudible 00:45:28] Medicaid Program has launched its healthy opportunities pilots, or is in the midst of launching its healthy opportunities pilots to have Medicaid to help address social determinants. Medicare advantage is starting to offer new benefits in that direction.

Rob Saunders:

So, what can we do using patient engagement, and using patient-driven healthcare to help advance social determinants? I want to start with you Hala. I know you mentioned a number of social determinants that are needed in order to really make progress. Would welcome your thoughts on what are the one or two things that we can start with to help improve those social determines of health?

Hala Durrah:

I think healthcare systems and organizations have to get outside the four walls of their institutions, and have to get outside the four sides of the survey piece of paper that they send out into communities. We have to start moving away from this. These are not tools of authentic and meaningful engagement. So, what that means, and what that looks like is we have to expand community partnerships. We have to reach out to community-based organizations, community-based leadership, patient, family, caregiver leaders across the country, and really start to co-design, and co-exist really together.

Hala Durrah:

And that requires moving outside the four walls, that requires moving outside the survey that you send to all your patients and families, many of whom, as Sarah has already mentioned, do not answer those surveys. And ultimately, when you do answer those surveys, when you sit in those meetings in the four walls, how are we really meaningfully changing social determinants? Are we understanding food deserts, housing insecurity, lack of internet access, lack of a safe environment? These are things we cannot address until we actually go out into the community, understand these issues fully, and partner with those who are already doing some of this work, who already have the data, who already have built trust within the community, and really seek to work with them, partner with them, so that we can address these things.

Hala Durrah:

And I think we look for very quick fixes in healthcare, such as, “Oh, let’s go into the EHR, and add social determinants.” Okay. Then what? Who’s responsible for managing those boxes that were clicked? Who are going to follow up with patients and families if they have in their EHR an issue that a physician, or a nurse has indicated is something that is really impacting their life in a very, very devastating way? And so, I think we really have to take a step back, and recognize that we have to get outside those four walls.

Hala Durrah:

We have to get beyond the four sides of those sheets of paper, and really begin to engage because there are so many of us out there ready and willing to partner, ready and willing to co-create equitable solutions, and some of whom have already done the legwork. So, let’s start to really push ourselves for those types of partnerships.

Sarah Scholle:

And just to build on that, Hala, we’re seeing that health plans, and health systems are increasingly recognizing that they need to play a role in identifying social determinants. And what’s really important is that as health systems, we’ve talked with community-based organizations that are just really afraid that what’s going to happen is the health system identifies a problem and says, “Okay, here, community organization solved this problem for us.” When the community organizations are under resources. They don’t have the infrastructure, the data systems.

Sarah Scholle:

So, that idea of collaboration between health system, health plans that have systems in place, that have data infrastructure, we’ll need to be thinking about how to work effectively with community organizations, so that we take this method. And it might be easier for a national plan to go out and make a contract with an organization to deliver food to people who’ve been discharged from the hospital, and do it in a national way, but that might undercut the community-based organizations that have been in that community forever, and who could do it, but don’t know how to create a contract, don’t have data systems, don’t know how to interact with health plans.

Sarah Scholle:

And so, that’s one of the areas we’re actually looking at right now to think about how do we encourage health plans to create structures that are going to make them better partners with community-based organizations, and the people they serve? Because we need to do that in ways that are respectful of the community, and also build it up rather than replace it.

Rob Saunders:

Thanks, Sarah. And the questioner also called out employers as well as an important actor here. David, turn to you, especially, given your long history at PBGH, are there roles that employers can play in helping to address social determinants of health?

David Lansky:

Yeah. I think it’s important to think about roles in this conversation. I think many employers are skeptical that the health system is the place to deal with the social determinants of health, or that the health plans that they are right now over-consuming social resources that should be released so that people who are very skilled, and oriented toward dealing with social factors in the community have the resources to do what they need to do. My fear is at a policy level, we will medicalize everything, and expect health systems, and health plans to address every social issue, which there’s no evidence they’re competent to do.

David Lansky:

So, the idea of partnership is really important. And that’s where the employers do play an important role. The employers have to take on their responsibility of having a safe, and positive workplace of paying appropriate wages, so people can earn a decent living wage, and have an environment that’s supportive of the various challenges people face. I know a number of employers who’ve discovered their own employees are homeless, or living out of their car. And employer didn’t realize that. When they became aware of it, they were ready to take some action, and support those families getting stabilized. But of course, there’s this separation that we have where it’s not appropriate for the employer to be prying into all the personal dimensions of everyone’s lives.

David Lansky:

So, I think this role definition is a really challenging question. But the employer’s primary responsibility is to be a healthy and positive employer, and create the environment and economic support for family. But I think the employers are wary of charging the health system with this responsibility, given its relatively poor performance at just dealing with medical care.

Rob Saunders:

Thanks, David. And I know we’re almost at our time. This has been a great conversation. And there are so many more questions that I didn’t have a chance to get to. I want to just throw one last question to the group for closing remarks. I would like each of the three of you to maybe share one or two thoughts on how do we make sure that if we have this conference again in 10 or 20 years, just as if we are 20 years from the Quality Chasm Series, that we’ll have made some real progress? What is the one to two actions that we need to take right now so that we actually will be able to say in 10 or 20 years, wow, we’ve really moved the needle? Maybe I go in reverse order this time from the way we kicked things off. David, did you want to maybe kick off what’s the one or two things that you think we need to be focused on?

David Lansky:

Well, I think a very powerful lever will be changing the measures we use to reward performance. And right now, we have an entire system we know it jumps every time where the dollars are changed. So, those who have control over the dollars, public payers, private payers, need to say, “We’re going to reward improvements in health.” I think if we do that, that will have a series of dominoes, ramifications that will be very powerful.

Rob Saunders:

Thanks, David. Sarah, your thoughts? What’s the one or two things that we need to be doing?

Sarah Scholle:

So, I’m going to build on David. So, we changed the [inaudible 00:54:34] need to build a roadmap because the measures we talked about today, our desires, they’re hard to implement, and they require really wholesale rethinking of how we collect information for evaluating healthcare organizations. So, we need to build the roadmap. And the roadmap needs to include culture change within the healthcare system that invites individuals, and families to work collaboratively with clinicians. It needs to change workflows, and data tools that make it easy for us to collect the information that we think is what matters most to individuals that allows us to use that information for guiding care, for guiding how people manage their own healthcare lives, and then also evaluating, and rewarding organizations. So, the measures with the roadmap for implementation that’s realistic so that we don’t say, “Oh, it’s a great idea.” And then, it didn’t work because we didn’t actually think through all the steps that we need to in order to make it work.

Rob Saunders:

Absolutely. And Hala, turn to you for the last word. What’s the one or two things that you think we need to focus on to really make progress?

Hala Durrah:

Oh gosh, the last word, that’s a lot of pressure, Rob. Well, first of all, if I look 10 to 20 years ahead, I hope that we no longer have conferences that have to be deemed the voice of the patient, that the patient caregiver community voice will be at every single conference, on every single board, on every single committee, on every single research team, and in positions of leadership, whether it’s in healthcare, education, so on and so forth. So, I guess, that may seem very simple, but is really a huge opportunity. And I hope we get to that point.

Hala Durrah:

And lastly, we got to start at that place of co-design, co-defining. We throw around terms a lot in healthcare, and jargon, but those terms have been defined and moved by the system. And truly if we want to get to this place of partnership, those words mean a lot. And they mean life and death. We’re in a pandemic. We’re in a situation that is life and death. We have communities that are suffering disproportionately, and have been for decades. And so, we need to really ground ourselves in this, and that those terms have weight. Your power has weight. And we all have the potential to change where we can go in healthcare, and truly get to a place of transformation for all, and an equitable system.

Rob Saunders:

Thanks, Hala. Unfortunately, that’s all the time we have for today. This has been a great panel. I personally have learned a lot, and have really appreciated everyone taking the time to chat. I want to thank the panelists, and thank the audience for joining with us this afternoon. Our one ask for the audience is that there’ll be a brief survey coming your way, and we hope you’ll take the time to fill that out, and share your feedback, and thoughts to help continually improve this type of webinar, and this type of summit.

Rob Saunders:

There’ll be a recording of the webinar, and additional materials that will be available on the Alliance’s website, as well as recordings of our other sessions. So, with all of that, thanks everyone for joining us today. And we hope you have a good rest of your week.