Using the Patient Voice to Drive Systemic Change

(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.