Policy Challenges, Clinical Care, and Knowledge Gaps

Join Cynthia Boyd, MD, MPH, John Hopkins Medicine, and Arlene Bierman, MD, MS, AHRQ’s Center for Evidence and Practice Improvement and Rafael Samper-Ternent, MD, PhD, UT Health Houston as they discuss policy challenges and clinical care in relation to MCCs and aging, as well as knowledge gaps and areas to be improved.

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Transcript

Cynthia Boyd, MD, MPH: Welcome. We're so glad to have you listening with us today. My name is Cynthia Boyd. I'm the Division Director for Geriatric Medicine and Gerontology at Johns Hopkins and I'm very glad to be kicking things off today with our guests who are going to talk to us about multiple chronic conditions. 

I'll ask both Dr. Bierman and Dr. Sanford to turn it to introduce themselves. Arlene, do you want to go first? 

Arlene Bierman, MD, MS: Sure, I'm pleased to be here. I serve as the Chief Strategy Officer for the Agency for Healthcare Quality and Research, which is the lead federal agency charged with improving the safety and quality of healthcare.

I'm a general internist, geriatrician, health services researcher. And my work focuses broadly on implementing strategies to improve care delivery for older adults and people living with multiple chronic conditions, specifically focusing on advancing health equity, person-centered care planning, and digital health solutions.

Cynthia Boyd, MD, MPH: Thank [01:00] you. And Rafael? 

Rafael Samper-Ternent, MD, PhD: My name is Rafael Samper-Ternent. I'm a geriatrician and a health services researcher in the School of Public Health at UT Health Houston, and I also lead the research and clinical innovation core for the Institute on Aging at UT Health Houston. My work focuses on health disparities among older Hispanics with multiple chronic conditions and cognitive impairment. And I try to translate and culturally adapt interventions to improve outcomes in this population group. 

Cynthia Boyd, MD, MPH: Wonderful. We're so appreciative to have you both here with us today. 

I'm going to ask Arlene to start us off and talk a little bit about what we know about how the health system does or doesn't work for people living with multiple chronic conditions and how we can think ahead towards where we want to go from where we are.

Arlene Bierman, MD, MS: Yeah, so I think we all know that the health system isn't designed- it doesn't work well for older adults, [02:00] people living with multiple chronic conditions. And, you know, I think we have lots of evidence for how to do it right. And it's been very hard to scale and spread this evidence across the health system because we really need transformational change.

And what we really want is a health care system that takes care of people living with disease rather than focusing on specific diseases and really seeks to optimize functional status and well being, in the context of people's lives and their goals. 

Cynthia Boyd, MD, MPH: Yeah, no, that's great. And I totally agree. One thing that we've been thinking a lot about is the role of geriatricians and how we think about also the role of the rest of the healthcare system in designing care for older adults.

Arlene Bierman, MD, MS: Yeah, so I think what geriatricians do is exactly what we need for older adults. And we'll never have enough geriatricians in the country, but we do have models [03:00] like GRACE that show how to provide geriatric support to primary care practices. And what we really need to do is now that we have the evidence on what works, we really need the evidence on how to make it work in practice and really make sure that all clinicians, practices, and health systems that care for people living with multiple chronic conditions have the support, competencies, and capabilities to do this. 

Cynthia Boyd, MD, MPH: Rafael, do you want to comment a little bit about our knowledge gap that we identified through this process for people with multiple chronic conditions? 

Rafael Samper-Ternent, MD, PhD: Sure. So we've been, given the limited amount of information that we've had over the last decade or so, we've been focusing on multiple chronic conditions as a single thing. But we all know that it's not a single thing. It's a group of diseases that interact with each other and have different implications. 

So I think one of the gaps that we need to fill [04:00] is start moving away from a summation of conditions or a list of conditions and moving into clusters of conditions that, interact with each other and have impacts on, individuals' health.

Once we start looking at the different clusters, then I think we need to focus on prevention. So we know that prevention works. We have tons of studies telling us that prevention is better than trying to cure or trying to treat, but we haven't been able to successfully implement prevention strategies to help older adults with multiple chronic conditions.

And so breaking it down into clusters of conditions, I think, will allow us to focus on more targeted prevention strategies for the different clusters. And that should help us improve the outcomes of this group of older adults.

In addition to prevention strategies that we know work, I think we need to focus [05:00] on care delivery strategies. Arlene mentioned that our healthcare systems are not- they might be designed, but they're not acting as systems that consider the different implications of having multiple chronic conditions and how that impacts quality of life in different older adults.

There are different interventions that are evidence-based and have shown that they work and they can change outcomes in older adults with multiple chronic conditions. We now need to weave them into the different health care systems and allow them to permeate all the activities that we do. 

So the 4M's framework has shown to actually improve how we perceive older adults in general, but how we perceive the needs of older adults with multiple chronic conditions specifically. And older adults within age friendly systems report that they're more satisfied with the care that they receive. [06:00] The 4M's framework can be enriched with the fifth M that geriatricians have been pushing for, which is multimorbidity. And that brings it all together into improving how we approach, older adults in general. 

And there are other models that work. So patient priorities care has been used in different healthcare institutions to move away from guidelines into what matters most to patients and guiding care of older adults with multiple chronic conditions based on what matters most of them. And guided care, the GRACE model and PACE models have also been shown to successfully help older adults with multiple chronic conditions. 

So now it's an effort. And I think Arlene's perspective on how policy can help us actually move these things into the standard of care rather than successful programs is where we need to be moving. 

Cynthia Boyd, MD, MPH: Yeah, Arlene, do you want to comment on that? I actually have the exact same follow [07:00] up question for you. 

Arlene Bierman, MD, MS: Oh, yeah.

So, Rafael, I just want to emphasize how important prevention is. You know, the reason we have multiple chronic conditions, it's because it's the same, you know, risk factors that result in multiple, the same, multiple different chronic diseases. And I think that we really need to focus on models of care, how to risk stratify in practice and the continuum of risk.

So there's been a huge focus on high cost, high needs patients, but then the other two groups that AHRQ likes to think about is those who are at a rising risk. So they're stable, but they have multiple chronic conditions, and they're just one event away from being in that high cost, high need. So what can we do to really, you know, bend the curve, change their trajectory?

And then there's a whole group of people who are at risk. They have multiple risk factors, and can we catch them even earlier and delay the onset of multiple chronic conditions? 

The other thing is, it's a real health [08:00] equity issue. Because people, you know, some racial and ethnic minorities, people who are socioeconomically disadvantaged have more chronic conditions and get them earlier in life and have a higher burden of illness.

So we really need to look at the equity domain. But in terms of what we need to do, I know people who have developed some of these effective models like GRACE have tried very hard to scale and spread them. And there's so many barriers to do that. So we need both, you know, health policy and policies within health systems to support this kind of work.

I think the 4Ms framework is starting to move us in that direction. But we really, sometimes payment and financial incentives are a real barrier. So we need to align, payment and financial incentives. We need to change the culture of care delivery and support people to provide more person-centered care.

But we also need the research. We need the evidence generation about, you know, what [09:00] works in, in terms of care delivery, but also what works to scale and spread these models. 

Cynthia Boyd, MD, MPH: In terms of knowledge gap, but definitely thinking about the implementation science for this patient population and how do we really improve care definitely feels like that is a part of the future agenda that we all need to have center.

Rafael, did you want to respond? 

Rafael Samper-Ternent, MD, PhD: I think, we have a lot of tools. It's just a matter of using them. So in addition to implementation science, which is now recognized as a discipline that can guide us into how not only to weave successful interventions into health care systems, but measure. How successful those implementation strategies are and how scalable they can be for healthcare system is, is really important.

And I think pragmatic clinical trials are also growing in interest and scope. And I think they provide a useful toolkit to actually implement [10:00] interventions in real life where patients are cared for and where communities are, and measure the impact of those things. I completely agree with Arlene that underrepresented groups are at the center of where we need to increase our efforts to actually see better outcomes, better clinical outcomes, and reduce the impact of multiple chronic conditions on their well-being and reduce the burden on their families that provide so much care to them. 

So it's, it's shifting patients and families to the center and getting health care systems and ways to identify and address social determinants of health and make health care systems better equipped to actually care, in the more global sense of the word, for older adults with multiple chronic conditions.

Cynthia Boyd, MD, MPH: One of the priorities that you and Aanand Naik identified, in the the work for this project was that identifying care delivery [11:00] strategies that maximize the benefits and limit the risk of treatment for this patient population is really important. And I, I just was thinking about, you know, we do know a lot, but that there is still a lot left that we need to do in terms of that, that real world practice, like what is it really like? Are patients actually experiencing, you know, person-centered care that's putting them at the forefront?

I'm curious, Arlene, if you want to comment a little bit on what the levers might be that can support us when we have the evidence as we continue to build the evidence that we need. And I definitely think we've got plenty to start with. What are the levers that we can work to try to shift to improve care for people living with multiple chronic conditions?

Arlene Bierman, MD, MS: Sure. First, I want to say that, you know, what we need to do in terms of the delivery system, and we need the policies to support and enable this, is we need to strengthen [12:00] primary care. We can't take care of an aging population without a strong base of primary care to be able to really provide needed care, person-centered care to people.

We also need, like, learning, the learning health systems. You're right, there's a lot we know. And a lot we don't know, because clearly, once you start getting into, you know, kind of models of care and organizational interventions, it really depends on context. And that's what learning health systems can do is we can learn while we're implementing. We can't wait till we have all the evidence. We can generate the evidence as we're improving care. 

And, you know, finally, I was glad to hear, Rafael mention the social determinants of health, because how do you control diabetes if somebody's food insecure, for example? So really the, the need to integrate health, social care and community services as well as public health.

And I should mention two exciting things that have happened in [13:00] the last month. The White House released a playbook on the social determinants of health, which really talks about how to bring the different services together in a community, and then how to interface with the health system. And also the Department of Health and Human Services put out a call to action on addressing the health related social needs in the context of care and what every different sector could do. And that's a really, I think, nice document for people to look at.

But in terms of policy levers, you know, there's, there's a policy levers at the federal level, but also at the state and local level. And I think one of the things that researchers need to do when starting research is say, you know, think about how your research could inform policy and make it policy-relevant.

And clearly Medicare and Medicaid can align payment with desired outcomes and increase to increase access to needed [14:00] care, and they are actually doing a lot right now. We really need workforce policy to make sure that, you know, the necessary geriatric expertise and competencies are distributed through the health system.

You know, I already mentioned the whole government approaches by bringing multiple sectors together to, to address the social determinants of health. And, you know, we need to develop and test, you know, new care delivery models. 

And I think, you know, AHRQ is doing some of this work. We have now an initiative around improving the management of urinary incontinence in primary care, which is trying to give primary care the supports they need to do that. And CMMI at CMS has just issued the guide model for dementia and making care primary. So I think there's a lot of opportunity to study these new models and really learn what works. 

Cynthia Boyd, MD, MPH: I'm so glad that you identified the [15:00] importance of the integration of social care, health, and community services because it feels absolutely fundamental to what people with multiple chronic conditions need is that we can't somehow compartmentalize the medical part as we're thinking about really trying to improve care.

So it's exciting to hear about the, you know, the ongoing work coming out in that space. 

One thing that Rafael, I know that you've thought a lot about is, how do we think about doing this in a way that keeps what matters to the person at the center? Wonder if you could reflect on that a little bit. 

Rafael Samper-Ternent, MD, PhD: Yeah.

So I've been very lucky to work with a patient priorities care group for several years now, and it's not the only way, but it's an evidence-based way that we found that we can use to actually translate what matters most to a patient into an actionable and realistic goal that then the primary care provider or the [16:00] clinician taking care of that patient can use to align the care that they provide to what matters most to patients.

So there are other initiatives, but it's The great thing about patient priorities care is we've been using it in different institutions. We now have the evidence base to show that this works not only to improve outcomes, but to decrease burden in patients with multiple chronic conditions and increase satisfaction in patients.

families and health care providers. So we asked the health care providers that actually get on board with patient priorities care. And at the end of the intervention, they say, this is why I became a clinician. This is what I want to do. I want to focus on what's important and relevant to patients, not what the guidelines are telling me to do with hypertension and diabetes and other things.

We're not disregarding those guidelines, but we're saying that those guidelines need to be aligned to what the patient wants, not the check marks that we all need to follow to get reimbursement or to [17:00] complete a clinical visit. So, so I think that's a lot of what we need to do. and. We're doing great efforts to ask underrepresented groups whether this evidence-based intervention means what we think it means to them and whether it's as efficacious in those groups as it is with the groups that we've implemented this with.

Cynthia Boyd, MD, MPH: Yeah, I think that's great. And, it brings to mind for me thinking about, like, how do we make sure that the ways that we're measuring value in the healthcare system actually reflect what matters to patients and oftentimes their families? And, you know, how do, how do we think about really trying to understand that scale if we're moving healthcare towards that?

Arlene, is that something you'd like to comment on a little bit? 

Arlene Bierman, MD, MS: Yeah, no, and I think there's so much we could do. And I think one of the things that I think is really promising is that there's a growing [18:00] community of researchers in MCC who and who together could have that body of evidence. And I think we also have to, we all know this, so we're talking to the choir here, but I'm not sure that everything we're talking about is general knowledge, you know?

And I think, how do we get the word out and how do we, like, raise improving care for people with multiple chronic conditions as a priority across the health system? 

So I think, you know, we have evidence to start, AHRQ has actually developed a research agenda. On multiple chronic conditions that we did with a lot of stakeholder input. We had a summit. And you know, so there's a lot out there. You're right. There's a lot of gaps, but the gaps shouldn't keep us from acting because we have enough to get started and we could continue learning more. 

Cynthia Boyd, MD, MPH: I think it's so great that you talked about the messages that we're sending because like I, I've been thinking a lot about that.

Like, how do we share like the tremendous joy of [19:00] doing geriatric medicine of getting the kind of unique patients where they are and really think about their sort of overall comprehensive care. Like how, how do we make sure that, that everyone sort of sees that and that we're really trying to train the workforce that we need across multiple healthcare professions to really see the tremendous joy I think that can come from taking care of people with multiple chronic conditions, you know, as they're aging, right? Like we're all aging. That's part of what we do.

Well, we just have a couple more minutes. I guess I want to see what else each of you want to chime in. I guess I'll start with Arlene, and then we'll go to Rafael. 

Arlene Bierman, MD, MS: Yeah, what I really would like people to do is think about, you know, the publication of the paper isn't the end of it. But really join a community, be part of your health system, and get the word out.

You know, I think about MCC as kind of a stealth pandemic. [20:00] It's upon us already. It's going to get worse. You know, there's a lot we could do to mitigate the impact, and we're not doing it. And it's going to be a real challenge to health system sustainability in not too distant future.

So really, like, what can we do together to really move this science and the implementation, you know, forward? And align policies to let us do that, right? 

Cynthia Boyd, MD, MPH: Yeah, that's great. Rafael? 

Rafael Samper-Ternent, MD, PhD: I completely agree with the points that Arlene made. I think it's, it's Working in silos is not going to get us to where we want. I think we have enough information and we need more information, but I think we can use the information that we have to not only preach to the choir, but preach to the people that actually need to know about this and make changes to improve outcomes in older adults with multiple chronic conditions, which is the ultimate goal, right? 

So understanding that is not the [21:00] clinicians and the patients and the family and the policy makers, but it's a group working towards. Improving outcomes in older adults. I think that's how we, we should think about a lot of things, but specifically multiple chronic conditions, because unless we bring all the stakeholders to the table and learn from each other on how to improve on what we know and make it scalable and generalizable to make it standard of care, we're not going to get the outcomes that we all want to see.

Cynthia Boyd, MD, MPH: Yeah, and I really appreciate that both of you have highlighted the degree that the issue of multiple chronic diseases is one of inequities. And so to me, it feels like this tremendous challenge that we have before us, but it's really an opportunity to really try to make a difference to address those inequities and disparities and, to me, it's sort of under, it sort of is the a challenge. I don't know if it's the underlining or the summation, right, but when we think about disparities across [22:00] multiple different domains, this feels like the place where it comes together and it just ends up being so striking. 

And so, you know, if you want to work on something important and I think have an awful lot of fun doing it. I think trying to improve outcomes based on what matters to people living with multiple chronic conditions is just about the best opportunity that's out there to make a difference. 

Well, I appreciate both of your time so much. Thank you for joining me and, look forward to future conversations and I'll hear more about all the great work you're both doing with your organizations.

Rafael Samper-Ternent, MD, PhD: Thank you for leading the discussion. 

Arlene Bierman, MD, MS: Yeah, thank y