How Community Health Workers Put Patients in Charge of Their Health

SHANOOR SEERVAI: 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.

SHANOOR SEERVAI: 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 Kangovi, 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.

SHREYA KANGOVI: Thank you so much for having me.

SHANOOR SEERVAI: So to get us started, tell me who community workers are. What do they do?

SHREYA KANGOVI: 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 health care 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. Aside from being a track coach, he was somebody who volunteered frequently, that community members look to because he’s just an empathic, nonjudgmental, caring guy that you’d like to tell your problems to, and he’s always willing to help out. And so Tony was somebody that we hired and trained and 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 had some anger issues and was really socially isolated.

And so his doctor 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, Tony’s a pretty charming guy and he gets him laughing and he 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 just meets him and gets to know him 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. Gerald had a great time, he reconnected with other people and he was motivated to continue to engage with Tony. And over the next few months, Tony helps Gerald to 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, 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 this is who a community health worker is. It’s a person who, in some sense is a lay person, but I don’t like that term because these are really magical, special people within our society that are often overlooked because of biases that we have. And we’re able to identify them and deploy them so that they can meet patients as people and really do this magic of supporting them in the ways that they want to be supported.

SHANOOR SEERVAI: 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 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 changing his social life.

SHREYA KANGOVI: That’s exactly it. If we take a step back and look at health, what is health and what makes people healthy? 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: What makes it hard for you to stay healthy, and what should we be doing to help? And a lot of it is not medical, right? It’s not the stitching up of a wound, it’s the social determinants of health, those we’re really talking about a lot now. It’s real-life issues. It’s how connected we are to each other, it’s our self-esteem, it’s what we eat. It’s all of these 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: 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 that’s so different than what we do in health care.

SHANOOR SEERVAI: So what sorts of patients doctors recommend community health workers for?

SHREYA KANGOVI: Sure. Well, 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 these programs vary tremendously in terms of who are the community health workers that are being hired? What are they doing, et cetera? So I’ll speak about the IMPaCT model in terms of the kinds of patients that we work with. And it’s very broad actually. 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. We all have heard about diabetes promotoras or peers who work with folks who have a mental health condition or for addiction recovery. And those models are really powerful, they can move those disease needles, but the problem is that patients don’t just have one disease, 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? That doesn’t make sense. So we always envisioned IMPaCT being a broader 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 that’s the only thing they have in common.

SHANOOR SEERVAI: 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 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 managing a chronic condition, but is also struggling, juggling three jobs, what they should be prioritizing.

SHREYA KANGOVI: Yeah. The mechanisms and the pathways through which poverty affects health are innumerable. You’ve listed just a couple and it’s important to acknowledge that that is just a part of the picture here. Yes, there are gaps in these discrete resources of 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 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 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. There’s institutional racism and classism, there are just multigenerational effects of poverty on your genes. And 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, this affects the middle class of America. It affects all of us.

And so 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 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 build this house for you, that may not be the full story. And actually that’s one of the reasons why maybe I’m just not smart enough to do all of the predictive modeling and the stratification to figure out what patients need, a priori, and match them to the right resources. We just ask patients what they need. People are experts in their own lives. And it’s something that we in health care have struggled with historically, we like to be the experts and patients are 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 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 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, “I need to find some social connections again.” Whereas, Maya in Nashville, Tennessee, who’s a Bhutanese refugee, can say, “I need to 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 it’s very tailored.

SHANOOR SEERVAI: 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?

SHREYA KANGOVI: I do think that is one of the special sauces and I’m excited to see that that concept has been and is being used more widely, we’re certainly not the only model to incorporate tailoring. But I do think that’s one of the hallmarks, which is figure out, 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, I remember talking about it and going 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. They 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.

SHANOOR SEERVAI: 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?

SHREYA KANGOVI: 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, we have a patient who had a lot of early childhood trauma, 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 did their thing, but he would go back out and come back in again. And on the last of these hospitalizations, he met a community health worker named Cheryl and she 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, 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, 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. 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 . . . 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 finding a room to rent and fast forward, 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 health care, but the work happens far upstream from there.

SHANOOR SEERVAI: And this is 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 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.

SHREYA KANGOVI: 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, “What brings you in today? And 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 were those relationships?” And it doesn’t take long, but 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 health care. And instead of just getting one line or a little piece of their fingerprint, you start with the big picture and then everything can fall into place.

And as we’re now replicating IMPaCT across 18 states, and 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, the life story and getting to know who the person is as a person and then letting them drive the car from there.

SHANOOR SEERVAI: Right. And you have embraced this in your own practice as a doctor, when you see patients. How do other doctors you work with feel about this approach? Are they nervous?

SHREYA KANGOVI: No. I think we’re 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 intrinsic altruism where they’re helping people all the time.

SHANOOR SEERVAI: 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?

SHREYA KANGOVI: 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 full-time employees with benefits, that they are integrated into health care systems, that they have manageable caseloads, that they have supportive supervision. Basically that we’re setting them up for success and 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 — 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 hands-on support across a variety of domains. 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.

SHANOOR SEERVAI: 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.