Fixing How We Pay for Care

JOEL BERVELL: My guest on this episode of The Dose is Dr. Mai Pham. Dr. Pham is a nationally recognized health care policy leader. She was vice president of provider alignment solutions at Anthem Inc., where she was responsible for value-based care initiatives. She previously served as chief innovation officer at the Center for Medicare and Medicaid Innovation, where she was a founding official and the architect of Medicare’s foundational programs on accountable care organizations and primary care. Dr. Pham is also on the faculty at the University of Pennsylvania. She brings a wealth of professional and lived experiences to our conversation, including her work now as the president and CEO of the Institute for Exceptional Care [IEC], which she cofounded with the goal of advancing equitable health care outcomes for people with intellectual and developmental disabilities.

Four percent of Americans — that’s 16 million of us — currently live with an intellectual or developmental disability, and those aren’t just data points for Dr. Pham, as her adult son has autism. Other common intellectual developmental disorders include cerebral palsy, Down syndrome, even attention deficit hyperactivity disorder or ADHD, and more rare conditions like Williams syndrome or Rett syndrome.

Dr. Pham, thank you so much for taking time for this conversation with me.

MAI PHAM: Thanks so much for having me.

JOEL BERVELL: So I just want to dive straight into the questions. Right now we’re in a prolonged period of policy change. President Trump has been aggressively reshaping health care with his executive orders. The NIH [National Institutes of Health] has been documenting the impacts and noting that advances that had previously been made in broadening access to health care are now shrinking. Against that backdrop, could you talk about what’s still working and what’s still in the works when it comes to increasing access and ensuring quality health care for all Americans?

MAI PHAM: Thanks for the question, Joel, because I do think it is important to remember that while we may be in the posture of trying to defend many things that are precious to us right now, we’ve been here before and in fact we’ve been in worse places before, so we know how to move the struggle forward. I think among the things that we can lean into are that most Americans now believe that health care access should be a given. I think that the Affordable Care Act did that, having the federal and state exchanges making access to insurance easier, and I think the democratization of health care knowledge has also fed into that. And at IEC, at my organization, one of the things that we think is underleveraged is people’s lived experience and their energy when it comes to getting and doing what is good for their health and well-being.

So I think that there are also really great assets we’ve developed in the movement around value-based care. Getting providers over that hump of imagining that good things can happen when they work together as opposed to only bad things can happen when they work together was a real cultural shift. And I think they are not going to let that go easily, and I think it would be difficult for them to undo what they’ve learned, to undo believing that data is your friend, to undo thinking about chronic disease management and every opportunity to engage with a patient and things like no wrong door and telehealth. I mean, we can just talk through all of the innovations that have happened over the last 15, 20 years that we now take for granted.

I also think that there’s still a lot of innovation in the industry and in the marketplace. We have to guard against some of the unintended consequences of those innovations — AI being a prime example — but they also offer so much opportunity to frankly decentralize health care delivery and governance and oversight. One of the things that I noticed was that as the population, the country becomes less certain about whether the Centers for Disease Control and Prevention, for example, will be the stalwart source of different kinds of health advisories or public health information. Other groups have stepped in and offered to be that new locus of credibility and authority, whether those are clinical societies or academic centers, what have you.

So we have a lot that is very strong in civil society that I think we shouldn’t forget. And we probably didn’t expect to have it tested so strenuously, but here we are. And we have more assets in that regard than the vast majority of countries in the world and we should consider that a blessing.

JOEL BERVELL: I really do appreciate that optimism that you were sharing because I think the way you’re looking at it, as a test for whether these measures were actually in place well, makes sense. And I think specifically about how now states are doing these a little bit differently, with the West Coast Health Alliance that has built up to uphold scientific integrity. I’m curious if you could talk about what states are doing, and you mentioned some of them, to preserve that affordability and access at this time?

MAI PHAM: So I don’t know that I have line of sight to all the state activity that’s happening, but it’s not hard to get into the mindset of state leaders at the moment to know that they are having to plan, if they haven’t already, and many of them already had started to plan for the fallout from H.R. 1 and what changes might come through that, not just directly affecting Medicaid and its ancillary programs like home and community-based services, but also its economic fallout, its effect on their care delivery systems, inclusive of rural hospitals, but also safety-net hospitals and institutions, community clinics, a whole bunch of infrastructure that they too had taken for granted even though it was already a challenge to feed that care delivery system. It’s now existential. And I think that states in some ways are proxies for people, right? Mayors and governors, they make the decisions that make our daily lives go. And when the risks are this immediate, their solutions are going to have to be brutally pragmatic and equally focused.

So I am expecting them to think about . . . Well, I will say the most optimistic take on this is that there are a small number of states that will have some budget flexibility to consider increasing their own investment into the health care system. Most states will not have that. Most states will be working with a balanced budget or a deficit. And for them, the art here will be making the least bad decisions and really prioritizing. And I hope that they take into consideration what the rate-limiting steps are for people to get the care that they need, because it may or may not be program eligibility. It may or may not be specific benefits depending on the fiscal impact of those benefits in Medicaid or home and community-based services. It may be provider payment rates. What is it that gets patients with Medicaid in the door to even have a chance at getting the services that they need? And I think that will be the key for states.

I think that states are also likely to be turning to the private sector, looking for collaboration there, whether that’s with employer organizations, chambers of commerce, or philanthropists. There’s just going to be a lot of holes that need to be filled.

JOEL BERVELL: Absolutely. Before we move on, I want to go a little bit deeper and talk about how the Trump administration’s brand of health care reform is playing out for patients. And I’ll just note here that the data still says the same story in the sense of racial disparities and the double digits still persisting — that people that are Black, Hispanic, Native American, all have less access, are less insured, and still experience worse outcomes when it comes to health care in the United States. So for people who have or once had coverage under the ACA, why does the ongoing instability in that marketplace still matter today?

MAI PHAM: Well, it matters a great deal because we haven’t seen the full impact of the policy changes yet. We know that health plans have already made decisions about this upcoming open enrollment period to pull back on their offerings, pull out of markets because of the policy changes. Now, there are court cases ongoing, but we don’t yet have a firm decision from the courts about whether to stay the changes or not. And in the absence of that, open enrollment will move forward. So we’re going to see the fuller impact of this over the next couple of years. And I do think that you’re going to see a bunch of market withdrawals and large national health plans rethinking their business strategy.

JOEL BERVELL: Yeah. And I know a lot’s been said about the work requirements in order to receive Medicaid. Is this happening? Is it still effective? And who would still be eligible? Hopefully you can shed some light for audience members.

MAI PHAM: So my understanding is that they will apply to Medicaid beneficiaries who fall outside of certain categories, so who are not disabled, who are not on TANF [Temporary Assistance for Needy Families], I believe, and largely focused on states that implemented Medicaid expansion. So those states that haven’t expanded Medicaid now have every reason to want to expand Medicaid, and now they’ll have to pause and think about what the work requirements kicking in would do.

JOEL BERVELL: Yeah, those perverse incentives to actually being able to expand Medicaid at all, which was . . . I spent a few years ago at the Urban Institute looking at what expanding Medicaid to the 400 percent of the federal poverty level looked like and how effective that was for getting more people to use emergency departments when it was necessary for them. But as you’re mentioning, now many of those states that most need it that maybe didn’t expand it before will pause and the burden will still be there, which I think is something that’s not talked about enough at all.

You spent much of your career in the health care payments and financing space as we’re talking about looking at structures both inside of major insurance companies and on behalf of the U.S. government at CMS [the Centers for Medicare and Medicaid Services]. So you understand the mandate, the pressure, and the aspirations of all these systems. I wonder if you can outline for me your own diagnosis of best care for what is broken across these systems. So maybe even like a CNPL, the “care now, pay later” solution, or other things.

MAI PHAM: Well, I wrote about this recently because one of the joys . . . I loved my time in public service and I was really fascinated in my time in private insurance. But I will say, having left government and having left a Fortune 35, it is delightful to have regained my First Amendment rights. And so I recently wrote about how if we were really serious about the cost, sustainability, and wellness priorities that we say we care about, we would do several things. One, we would make the status quo so uncomfortable for providers that the only logical option they would choose would be value-based care. Second, we would remove distractions, what I call distractions, that are arbitrage opportunities littered all over the payment system right now that encourage providers to play games with the payment system to optimize payment rather than focusing on the work of taking care of patients. And so I think those, honestly, are the two big goals.

So what does that look like to make the status quo really unpleasant? First of all, there are providers who are doing the right thing now. They need more support. So I am very much in favor of not taking a one-size-fits-all approach to providers and looking for every which way to reward good performance, whether that’s on quality or savings or care coordination, whatever it is. For those who have not engaged in value-based care, I really think the solution here is to mandate it. And again, I don’t mean all providers who aren’t in value-based care right now, but there is a subset of providers that I would characterize as those health systems that have “must have” status in their markets. The ones who by dint of reputation or market size, must be included in every health plan network, right? You can’t afford to not have them in your network. That gives them all the negotiating leverage in the world, and hence they can command higher and higher and higher prices, which is what we’ve seen in the data.

Well, that behavior spills over into publicly financed programs like Medicare and Medicaid as well. So those providers, I believe, will not do the right thing unless they are forced to. And so mandating that they join value-based care initiatives and are on a rapid glide path to downside risk would really help focus their attention on learning the skills for population care management and finding the right partners, and frankly, making the right investments and perhaps divesting from overhead and infrastructure they have now that is not going to help them with that.

There’s a lot of opportunity cost when a health system invests in the next new really fancy PET scanner or whatever it is. I don’t even know all the names of all the tools nowadays. And it’s not that they don’t have value, it’s just it’s gotten out of proportion to the value that they bring to a population or to the system. And then there are technical issues having to do with how you structure those financial arrangements and such. But I think at base, that’s what we’re talking about is getting the nonparticipant, high-cost, low-efficiency providers into the game by force with support. We don’t want them to fail, in fact, we need them to not fail, but we also need to motivate them.

And then the second part of that is removing the arbitrage opportunities. But one, for example, is the way that the payment fee schedules, whether that’s for physicians or hospitals, are currently structured. There are thousands of billing codes, thousands, and many of them are for very similar procedures. And so what happens is providers choose the billing codes that maximize how much they can get paid for a procedure that is not all that different from a bunch of other procedures. Well, if you grossly simplified that list of codes from thousands, you can keep the billing codes at thousands, but you group them into payment families and then you pay all the codes in a given payment family the same rate. It removes a whole ton of gaming opportunities and frankly, distraction. And practices invest an enormous amount of money in what they would call revenue cycle management. And I completely understand; it’s a business and you have to run it that way. But again, it’s about proportion. The proportion of energy and resources that goes into that versus into what clinicians went into medicine to do, which is to take care of patients, I think is out of whack.

Another great example is risk adjustment. Well, the status quo options tools for doing risk adjustment are very gameable once again, and we see evidence of that because we see lawsuits nearly every year from CMS directed at health plans that they believe have overcoded diagnoses and such for Medicare Advantage beneficiaries. Instead, imagine a world where the risk adjustment is based on a combination of clinical data, which providers and health plans can manipulate, and nonclinical data, which they cannot manipulate. So consider, for example, somebody’s zip code or consider, let’s say, their property taxes or their employment status. These are things that a provider or a health plan cannot manipulate, and yet we know that they have downstream impacts on health, right? So one, we can create better restratification tools, better prediction tools, and two, it’s far less gameable, and three, it would remove another distraction because the industry to risk code optimally is even larger than the industry to optimize billing.

My last item is for payers and providers to get real about authentic community engagement. I know this one sounds soft, but I’m talking about very, very concrete opportunities to not just occasionally ask a few community advisors on your advisory board, “What do you think? Here’s what we’re planning on doing.” No. To engage them in every step of the major decisions. First of all, they’ll tell you what the problem is. You think you know what the problem is, but they’ll tell you what the actual problem is and they’ll tell you what they think they need. People are pretty smart about what they think would improve their health. And then they’ll help you design it. And you are likely to get to the better solution faster and actually end up saving time and resources.

JOEL BERVELL: Absolutely. And not just asking the community leaders but asking those who are actually most impacted by it, even if they’re not necessarily at the leadership perspective, but are still part of those communities.

MAI PHAM: Exactly. We love the advocates, the professional advocates, but we stock our projects with frontline lay community members.

JOEL BERVELL: And I actually want to get into that a little bit more and spend time on what your goals were when you got into the intellectual developmental disorder care space when you first started out. Because it sounds like much of the way you’re thinking about these things and really making sure we’re approaching and connecting with community members that are most affected by specific issues was a guiding force for you. So when you first started, what was the most urgent thing that you were looking at and where are you now on that issue five years later?

MAI PHAM: I was motivated as a mother to try to address gaps in the system that our family had experienced and that I thought, “Wow, it must be so much worse for other families who don’t have our resources or our health care connections.”

And our diagnosis of the problem led us to a certain theory of change, that there were three major areas of gaps. One, that general clinicians, not the experts in IDD [intellectual and developmental disability], but regular clinicians were woefully prepared in terms of training to support this population. Second, that there isn’t hugely strong consensus on what the ideal care model should look like and where there are lessons learned and good exemplars, they haven’t been scaled. So it’s about scaling good care models. And third, how do you make this sustainable through financing and payment? And because we had to. We knew that we couldn’t do this work without the support of the IDD community. Well, how do you get the IDD community? You first get an intro and then you get a second introduction. And with every introduction, you have to rebuild trust because, as Henry Claypool, who is a disability advocate par excellence, once told me, the IDD community at baseline believes that health care is primarily a source of harm. That is their starting point. So if you want to do anything in health care that involves them, you have to first dig out of that hole.

So then you ask, how do we dig out of that hole? And basically they told us, and that is how we came to these principles around authentic engagement, that we then translate into very concrete processes and procedures. Things like not just using plain language, but when we can afford it, also having a graphic illustrator. Things like using structured emails so that it’s easy for people to see the information they need. Things like hand-holding someone to fill out a W-9 so that we can pay them. Things like paying them, because their time and lived experience are valuable and we need to treat it as such. And most importantly, it’s creating the safe collaboration space. When we bring community members into the same virtual room as really important health care leaders to level the playing field and kind of smooth out that hierarchy and demonstrate to health care leaders that these are people important to listen to, that they’re going to learn something, and that together, the solution will be better.

And in that space, we try to project what I would call multilateral empathy. Everyone’s problems are important, but voices of community members are primary. So we definitely need to address their needs and we’re going to try to address the clinicians’ needs and the payers’ needs and the policymakers’ needs — sometimes all at once. That is how we come up with solutions like this app that we designed because community members . . . stakeholders in one community we work with said, “We really need to solve emergency care. It’s the worst pain point in health care for our population.” So we said, “Okay, how would you like to solve that problem?” And first, they defined the types of issues including, “Wow, it is really hard to get good information on a patient when you don’t know them and they are stressed,” says the ED clinician. Then the community member says, “Wow, it is really hard to communicate who I am when I am really stressed and the clinical team doesn’t know me and they’re stressed.” So together they designed this app, it’s called Always Uniquely Me, and it helps people with disabilities and caregivers show clinical teams who they are. Here’s what I’m like when I’m at my best. You can click this video. You and I know how much an ED doc would pay for an instant clinical baseline, right?

JOEL BERVELL: Oh, absolutely. I would pay for that as an internist.

MAI PHAM: Exactly. And then scripts like tips on how to work with me. Here are the types of things that make me anxious. Here are the best ways to calm me down. If you need to help distract me, click here for my favorite tunes, and so on and so on. And what we found was that not only were patients and caregivers delighted, but the clinicians were delighted. We’re solving a problem for them. And they feel so empowered, not just because solving the problem, but that half the solution didn’t have to come from them. And I firmly believe that if a small nonprofit of six people on the East Coast can do this, that large government agencies can do it too.

JOEL BERVELL: Absolutely. But there has to be that will to actually want to do it and for them to see the great work that you’re doing, so they recognize that it’s necessary. I think a lot about the fact too that people with IDD have higher rates of chronic conditions, heart disease, diabetes, many face a maternal mortality rate that’s six times greater than the general population, yet they’re less likely to receive preventative care, are screened less often, for many of the reasons that you just mentioned. I’m curious if you can talk about the cost of that so that when we are having to go out to a government official and prove the worth of things like this, they actually understand why it matters.

MAI PHAM: So we actually have very spotty data on the cost, in part because people with IDD are very poorly documented and coded in health care data. We believe when you look in claims or electronic medical record data, you’re probably only seeing less than somewhere between 1 percent and 20 percent of the actual population. That said, we do know that people with IDD have roughly twice the ER visit rates as the general population. We know that they have extraordinarily high rates of suicidality, six- to tenfold higher, especially in young adulthood. And they are disproportionately treated inappropriately with antipsychotics, and they probably end up in more acute mental health facilities than is necessary if the underlying issues causing behavioral outbreaks were understood and addressed. So, I can’t give you a number. What I can tell you is that it’s nontrivial and it matters a great deal.

JOEL BERVELL: Absolutely. When you first decided to step into this space professionally, not only as a parent, what was it that you wanted to tackle first and how has that work evolved? Is it the same things that you expected or has it changed?

MAI PHAM: I really wanted to start working with community members. I really wanted to put them in the same room with health care leaders and watch both sides transform. And that’s what we’ve seen. We have received two page-long thank you letters from health plan executives who tell us, “This has changed me and how I think about my work.” That’s priceless culture change because they will go back to their organizations and it opens up so many doors in ways that you can’t predict. I think that’s what I was most looking forward to was the sort of subversive culture change.

JOEL BERVELL: Your mission really calls for flexibility to meet people’s needs, and that sounds reasonable, but in reality, systems can be rigid. So I’m curious if we can talk for a minute about how you get there? What kind of work is needed to move toward a more flexible future?

MAI PHAM: Yeah, I agree with you, Joel, that I think clinical leaders really freeze up when you talk about flexibility and tailoring care because all they see is, okay, every patient is a one-off. That’s really not the approach that we promote. The approach we promote is to think of this as universal design in health care. So essentially building the health care equivalent of curb cuts. It was a group of really angry disability advocates in San Francisco who took mallets to curbs because they needed them to be accessible for wheelchairs. But once you started seeing them appear in towns and cities, in airports and train stations, what you discover was that, oh, designed for people in wheelchairs, but look, also super helpful for parents with strollers or travelers with luggage. Look at that. When you design the system to serve everyone on the bell curve, you serve everyone better.

That’s our approach to health care at IEC. So for example, that app that I described, it was one of the clinicians, the ED clinicians who said, “Wait a minute, why can’t I have this for my dementia patients? Why can’t I have this for non-English speakers?” And we said, no reason why not. And I think that’s why we get so much attention and traction from payers, including CMS, is because they see how generalizable the lessons are. It will make things better for everyone.

JOEL BERVELL: That’s a beautiful lesson, and I really do truly appreciate you sharing that.

Well, Dr. Pham, I want to say thank you again for sharing your insights and experiences with us today. I think I’m going to be thinking about that curb cut story a lot and how designing something for accessibility at the margins ends up reaching everyone, and that’s the heart of the work that you’re doing right now by centering people with IDD, by creating a health care system that’s more humane, more flexible, and better for everyone. Thank you for your leadership and for reminding us that it takes us all to truly build equitable care.

MAI PHAM: Thanks so much, Joel. It was a real pleasure.

JOEL BERVELL: This episode of The Dose was produced by Jody Becker, Mickey Capper, and Naomi Leibowitz. Special thanks to Barry Scholl for editing, Jen Wilson and Rose Wong for art and design, and Paul Frame for web support. Our theme music is “Arizona Moon” by Blue Dot Sessions. If you want to check us out online, visit thedose.show. There, you’ll be able to learn more about today’s episode and explore other resources. That’s it for The Dose. I’m Joel Bervell, and thank you for listening.