The Dose - How Community Health Workers Put Patients in Charge of Their Health

Episode Date: May 29, 2020

Health care is about so much more than medical tests or treatments. But, too often, health care providers forget to ask patients what they think would make them feel better. Community health workers can help people take charge of their own health. Often living in the same communities and coming from similar backgrounds, they are able to share life experience with their clients and engender trust. On this episode of The Dose, we talk about one community health worker program, IMPaCT, that is helping some of the poorest and sickest Americans meet their health and social needs. As the COVID-19 pandemic upends all our lives, this idea of putting patients in charge — rather than telling them what to do — has particular resonance. Listen to our conversation with guest Shreya Kangovi, a primary care doctor and professor at the University of Pennsylvania, and then subscribe wherever you find your podcasts.

Hey, Dose listeners. You won't hear us talk about COVID-19 today because we recorded this episode in February. It's about community health workers, trusted lay people who are trained to help patients in their communities. We're airing it today because it reveals the problems many Americans, especially people living in poverty,

were struggling with even before the pandemic hit. Now, in addition to worrying about their health, people are confronting issues like unemployment, social isolation, and access to food. Then on a future episode, we'll follow up with how COVID-19 has made these issues worse and what community health workers are doing to help. The Dose is a production of the Commonwealth Fund, a foundation dedicated to health care for everyone. Hi, everyone. Welcome to The Dose.

Today, we're going to be talking about a radical idea, putting patients in charge of their own care and how community health workers can help with that. Our guest, Shreya Kangavi, is a primary care doctor and professor at the University of Pennsylvania. She leads a community health worker program, which is aptly called IMPACT, because it's been successful in many different contexts. Shreya, welcome to the show. Thank you so much for having me. So to get us started, tell me who community workers are. What do they do?

Yeah, I'll answer that question maybe with a story of a community health worker named Tony Davis. Tony is not somebody who has a healthcare background. He's actually a Navy vet and is a former high school track coach. And he's someone that we specially identified as somebody who is a natural helper within his community. You know, aside from being a track coach, he was somebody who volunteered frequently that, you know that community members look to because he's just an empathic, nonjudgmental, caring guy that you'd like to kind of tell your problems to, and he's always willing to help out. And so Tony was somebody that we hired and trained and sort of deployed to be a professional helper. And as a community health worker, he met up with a patient, let's say his name is Gerald. And Gerald is also a veteran. He served in Operation Desert Shield. His doctor at the local Veterans Affairs Medical Center referred him to Tony because Gerald was really struggling with his diabetes, with gout.

He had some traumatic experiences during his time in combat and, you know, had some anger issues and was really socially isolated. And so, you know, his doctors thought, let me refer him to this impact community health worker. And so Tony met up with Gerald at the VA canteen. And Gerald did not make a lot of eye contact at first. But eventually, you know, Tony's a pretty charming guy and he gets him laughing. And he kind of says, meet up with me and a group of guys and a group of veterans and let's all go to the movies. And so he sort of, you know, just meets him and gets to know him, you know, as a person. This isn't the typical patient experience. And builds that little bit of trust on a human level and coaxes Gerald out of his shell

and gets him to come out into the social setting. And it was really transformative. You know, Gerald had a great time. He kind of reconnected with other people. And he was motivated to continue to engage with Tony. And, you know, over the next few months, Tony, you know, helps Gerald to, you know, go back and see his doctor to get his diabetes under control. He gets him community work training so that Gerald was able to find work painting houses. He helped him to find an apartment that he could rent. And they keep engaging with this group of guys,

you know, this other group of veterans that has become almost a close-knit squadron. They call themselves the Renegades. And they have planted urban gardens. They're actually mentoring other young boys and men in North Philadelphia. And so, you know, this is who a community health worker is. It's a person who, in some sense, is a layperson.

But, you know, I don't like that term because these are really magical, special people within our society that are often overlooked because of, you know, biases that we have. And we're able to identify them and deploy them so that they can meet patients as people and really kind of do this magic of supporting them in the ways that they want to be supported. And so what I'm hearing is that Tony isn't providing medical care in the narrow definition of prescribing a medicine or stitching up someone's wound. But if we think about health more broadly and think about a person who was isolated and kind of angry and dealing with a lot of emotional issues, maybe that were actually having an impact on how he felt physically. Tony is somebody who helped him to work through those issues by introducing him to other people

and sort of changing his social life. That's exactly it. You know, if we take a step back and look at health, what is health and what makes people healthy? You know, if we take a step back and look at health, what is health and what makes people healthy? You know, actually, when we first started developing impact about a decade ago, we interviewed 1,500 patients who live within high poverty neighborhoods, many of whom had chronic health conditions or had been in the hospital. And we asked that exact question, you know, what makes it hard for you to stay healthy and what should we be doing to help? And, you know, a lot of it is not medical, right? It's not the stitching up of a wound. It's, you know, the social determinants of health as we're, you know, really kind of talking about it a lot now.

It's real life issues. It's, you know, how connected we are to each other. It's our self-esteem. It's what we eat. It's all of these, you know, myriad issues that shape the fabric of our lives. And what community health workers are great at is just asking patients that same question over and over again and saying, you know, what do you think you need? What's the root cause of any health problems that you may be having? And what could we be doing to help? And, you know, that's so different than what we do in healthcare. So which sorts of patients do doctors recommend community health workers for? Sure. Well, you know, one quick piece of business we ought to clear up. Community health workers are a very broad term. And so there are so many different types of community health workers all across the United States. And, you

know, these programs vary tremendously in terms of, you know, who are the community health workers that are being hired, what are they doing, etc. So I'll speak about, you know, the impact model in terms of, you know, the kinds of patients that we work with. And it's very broad, actually. You know, one of the things that we learned, actually, by studying the past successes and failures of community health worker programs over the past 200 years is that a lot of times community health workers do get pigeonholed to only working with patients who have a specific medical condition like diabetes. You know, we all have heard about diabetes promotoras or peers who work with folks who have a mental health condition or, you know, for addiction recovery. And those models are really powerful.

You know, they can move those disease needles. But the problem is that patients don't just have one disease. You know, they have three or four or five. And so you quickly start to get into, well, am I supposed to have five different community health workers? Like, that doesn't make sense. So we always kind of envisioned impact being a broader, you know, patient-centered model, not a disease-centered model. And so the program is really open to patients of any different disease. We don't have that as a criteria. The only condition, actually, that we focus on is poverty.

Impact is specifically focused on people who live within high poverty communities. And in all of our trials and all of the direct care work that we do in the Philadelphia region where we've served over 12,000 patients, the bulk of these individuals are publicly insured or uninsured people who live within high poverty zip codes. But, you know, that's kind of the only thing they have in common. And two things come to my mind when we talk about people living in poverty. One is that they often don't have access to the resources that they might need to get and stay healthy. And those resources can be incredibly varied from people who are struggling with homelessness to others who perhaps don't have enough money for transport. So if they are managing a chronic health condition, they can't afford to get themselves to their doctor or the hospital. And then I guess the other thing that sort of comes out of living with these challenges is that you have many competing priorities. And other doctors and health policy

experts I've spoken to have talked about this. It's much harder to, again, tell somebody who's managing a chronic condition but is also struggling, juggling three jobs, what they should be prioritizing. Yeah, the mechanisms and the pathways through which poverty affects health are innumerable. You've listed just a couple, you know, and it's important to acknowledge that that is just part of the picture here. You know, yes, there are, you know, gaps in these discrete resources of, you know, food, housing, transportation, but it's more than that, which I think is important to say out loud because the conversation around the social determinants of health has for some reason gravitated to these

very discreet, you know, plug and play, screen and refer, are you hungry, feed this person type of solutions. But that's quite simplistic, actually. You then talked about, you know, boy, there's just so many competing demands for time and resources and energy. And that's another layer. There's so many other layers. You know, there's institutional racism and classism. There are just, you know, multi-generational effects of, you know, poverty on your genes. And, you know, we've been talking about poverty, but I think it's important to say that this is not just about rich versus poor. The whole issue of the social determinants of health is there's a gradient, you know, this affects the middle class of America. It affects all of us. And so, you know, I think that the takeaway is where you're born and how much you make creates this whole unique fingerprint

of how your day-to-day life will affect your health. And just like a fingerprint, there are layers and layers and layers. And if you take an overly simple approach and say, okay, I'm going to screen you for unmet social needs and refer you to this food pantry and, you know, build this house for you, that may not be the full story. And actually, that's one of the reasons why, you know, maybe I'm just not smart enough to do all of the predictive modeling and the, you know, stratification to figure out what patients need a priori and match them to the right resources. We just ask patients what they need, you know, and they, people are experts in their own lives. And it's something that we in healthcare have sort of struggled with historically. You know, we like to be the experts

and, you know, patients are sort of, you know, in our charge, in our care, it's a paternalistic model. And when we were first designing impact after interviewing patients, we heard loud and clear that, you know, patients felt like they were being talked at, that they weren't being heard, that they weren't given control of their health. And so we kind of, you know, used social science and behavioral science theory to create this new radical way of delivering care. And even though it sounds complicated at its heart, it's a very simple thing. Every community health worker, when he meets a new patient, gets to know him as a person. And as part of that conversation says, Gerald, what do you think you need in order to improve your health?

And so Gerald in Philadelphia can say, you know, I need to find some social connections again. Whereas, you know, Maya in Nashville, Tennessee, who's a Bhutanese refugee can say, I need, you know, to sort of find my way out of this dark place from living in a refugee camp all of these years. And so I just need somebody to go on a walk with me. And maybe I need to get connected with a therapist who can give me some evidence-based counseling for my PTSD. So, you know, it's very, very tailored. And that's one of the things that makes Impact a unique community health worker program in that it's really tailored to the patient. Is that correct? I do think that is one of the special sauces. And, you know, I'm excited to see that that concept has been and is being used more widely. You know, we're certainly not the only model to incorporate tailoring, but I do think

that's one of the hallmarks, you know, which is figure out, you know, ask each patient, what do you think you need? Create these tailored action plans and then provide hands-on support to get those things done. When we first started designing this, you know, I remember, you know, talking about it on Grand Rounds to a bunch of doctors and scientists, and people were like, what are you doing? I mean, what if a patient says they want to go bowling? What does that have to do with their hemoglobin A1C of 14?

They just did not think that this was going to work. Didn't think it was going to move the needles that we really care about in health care. And I think that's why we needed the science, because we didn't know whether it was going to work. And it turns out that it does move quite a bit of the needles that we're focused on in health care. So it does work, you're saying. But if a patient says they need to go bowling, how do you measure the impact that has on their A1C level?

Well, what you do and what you measure do not have to be the same thing, right? So the process is actually really different than the outcomes here in a pretty fascinating way. If we meet a patient and they say, you know, we have a patient who had a lot of early childhood trauma, you know, spent some time in jail as an adult when he got out, was really estranged from his family, was living in an abandoned store without any heat because he couldn't get subsidized housing anymore. And he's someone who tried to take his own life several times in a one-year period. And he kept coming into the hospital. He met with psychiatry and he met with social work and they, you know, they did their thing,

but he would go back out and come back in again. And on, you know, the last of these hospitalizations, he met a community health worker named Cheryl and she, you know, did the impact thing with him. She got to know his life story. One of the questions she asked him was, when was the last time that you laughed? And he was a little taken aback. You know, it was not a question that the psychiatrist had asked him. And he realized out loud that he hadn't laughed for 27 years. And so then Cheryl said, wow, you know, what was it that you were doing 27 years ago that made you laugh? And he said that he had been bowling with some friends. So as a first order of business, when he got discharged from the hospital, Cheryl and a coworker took him bowling and he realized that life could be fun again. You know,

he had a good time. And a lot of us take for granted that life is fun and worth putting the work into, but that's not the case for a lot of people. And you do need to kind of, it's really amazing because when you follow the patient, they can tell you that that spark and that joy is the thing that they need. And then he was motivated to work with her on the traditional things, right? Like linkage to primary care and then behavioral health and, you know, finding a room to rent and fast forward, you know, he's working in retail, he's living stably, he's not in and out of the hospital. And so, yes, you can measure the downstream things that we care about in healthcare, but the work happens far upstream from there. And this is kind of making me think about something you said earlier about the fingerprint and how there are so

many layers that you need to consider in the formation of a fingerprint. And maybe what's, what sounds radical to me here is that instead of starting with the layers of what medicine do you need to take? How often do we need to check your blood pressure, is instead you start with, when was the last time you laughed? What were you doing? And if you start that way, perhaps you're opening up the layers in a different way, and that could be more effective than the traditional medical approach. That's exactly right. I think I have learned a lot from my community health worker colleagues and borrowed actually from them in my primary care practice. I totally have changed how I interact with new patients. I used to, when a new patient walked

in the door, I used to greet them and be warm and things, but I would say, you know, what brings you in today and what kind of, what's, what kind of medical problems have you had? I do not do that anymore. I universally have patients sit down and I say, tell me about your life story. Where were you born? Who all lived in that house with you? How are those relationships? And I, you know, it doesn't take long, but you know, we have a conversation and they tell me about their life and who they are as a person. And again, it's so simple, but it's very radical in healthcare. And, you know, instead of just getting one line or a little piece of their fingerprint, you get, you start with the big picture and then everything, you know, can fall into place. And, you know, as we're now replicating impact across 18 states and, you know, can fall into place. And, you know, as we're now replicating impact across

18 states, and, you know, a lot of these programs look different from our core program that we developed in Philadelphia. There's adaptation, but one common thread is that narrative medicine approach, if you will, you know, the life story and getting to know who the person is as a person and then letting them drive the car from there. Right. And you've sort of embraced this in your own practice as a doctor when you see patients. How do other doctors you work with feel about this approach? Oh my God. Are they nervous? No, I think we are dying to restore the humanity back into medicine. Community health workers are people who share life experience with their patients. They have been there.

And beyond that, the sociology literature describes community health workers as natural helpers. So A, they're experts in these problems. And B, they have this like intrinsic altruism where they're helping people all the time. Is this a full-time job? Do they get paid to do it? Is this something that people volunteer to do because out of the goodness of their heart? Right. So again, community health workers as an umbrella category, there's a million different answers to those questions. In the impact model, it is definitely a full-time job and it absolutely comes with a living wage and

full benefits. And I think that's a very important thing. And we're making sure that we're hiring people with all of the right personality traits for the job. The other thing is the infrastructure. And what I mean by that is we are making sure that the community health workers are truly kind of full-time employees with benefits, that they are integrated into healthcare systems, that they have manageable caseloads, that they have, you know, supportive supervision. You know. Basically that we're setting them up for success and that we're also creating a good workplace environment for them.

You have to hire people who are incredible, who may not have a lot of letters behind their name. Most community health workers have the same level of educational attainment as patients. So a high school degree. But these are incredible people that go through layers and layers of an interview process. And then the actual intervention model, you know, in other words, what they are doing and how they are doing it has to, again, elevate the role. They are, like you said, getting to know people holistically.

They are essentially doing that biopsychosocial assessment. They're coming up with tailored action plans. They're providing up with tailored action plans. They're providing hands-on support across a variety of domains. You know, they're navigating the health system. They're coordinating care. They're providing these kinds of informal types of social support. They're connecting them to resources like transportation and childcare. And when there's clinical issues, they're getting them in front of a clinician. That's it for today's show. Thanks for listening. Stay tuned for the next episode about community health workers, in which we check

in with Shreya and her team about how they are responding to the COVID-19 pandemic. The Dose is hosted by me, Shana Ras Sirvai, our sound engineer is Joshua Tallman. We produced this show for the Commonwealth Fund with editorial support from Barry Scholl and design support from Jen Wilson. Special thanks to our team at the Commonwealth Fund. Our theme music is Arizona Moon by Blue Dot Sessions. Our website is thedose.show.

There you'll find show notes and other resources. That's it for The Dose. Thanks for listening.