Understanding what ails us

Rachel Ceasar thought she wanted to be a psychologist.

“I knew I wanted to go into healthcare to connect with people,” recalls Ceasar, a healthtech anthropologist who works internationally with nonprofit and for-profit tech and health clients.

But she realized fairly quickly that even the ostensibly people-centric field of psychology still didn’t feel as if it gave enough credence to people’s full stories or the context of their lives. 

“It felt like the research in psychology lacked a certain level of nuance,” she recalls. “We would take 20 people in a room, and run whatever test we wanted to test, but we wouldn’t account for all of the variables. We wouldn't ask, ‘Did you eat breakfast today?’ or to take in account their commute, or ask any of the questions that would give you an understanding of the cultural context or the social dynamics of the room. And so I realized psychology was maybe not the best tool to understand some of those underlying curiosities.”

An advisor suggested a move into medical anthropology, and it was there that Ceasar found the reverence for context that could help her understand the “why” behind people’s behavior. One of her first big projects was a study of the long-lasting residual effects of the Spanish Civil War, an event that occurred in the 1930’s but which Ceasar says many Spanish people still weren’t ready to talk about in the early aughts. Then around 2000, a historical memory movement started to conduct systematic exhumations of mass graves from the war, and many started to look for their relatives. And while it may sound like an odd place for a newly minted healthtech researcher to begin her work, Ceasar says the work was really about catharsis for the living.

“A lot of people wouldn't find the relative they were looking for,” Ceasar says. “That happened a lot. But the whole process of coming together, exhuming the bodies and reburying them in a proper cemetery was a huge cathartic process for people. It was extremely important not just for human rights and on a political level, but on a personal level as well. It was really about helping to manage this kind of chronic pain.”

In that sense, she says, the project helped set the stage for the work she’s done since, working with clinicians and patients to try and understand the opioid crisis, or reimagining what a South African healthcare system might look like post-apartheid for farmworkers. It also helped her hone in on the multifaceted approach she brings to her work, which often requires delving into some uncomfortable topics, like racial and gender bias, and socioeconomic class. Ceasar acknowledges these are issues we aren’t always comfortable talking about. But, she says, it’s exactly the kind of information we need to get a full picture of what’s happening with our medical system and our overall health. 

dscout sat down with Ceasar to talk about her work across the globe, and how context and qualitative data are critical to curing what ails our healthcare systems worldwide.

dscout: A lot of your work has to do with looking at the world of healthcare beyond healthcare. The economic, cultural and social conditions that contribute to why people have the healthcare issues they have. That’s certainly a big piece of the puzzle when it comes to the current opioid crisis, which is something you’ve looked at closely.

Rachel Carmen Ceasar: It is, and a lot of the work overlapped in different ways with the work I’d done in Spain, in terms of how people deal with chronic pain. Because it's not just, “I have pain and I'm going to take opioids. Or my relative was killed and I want to rebury them, and I live with this pain every day.” It’s looking at how families are involved, how communities are involved. How does someone who is viewed as depressed or as an addict deal with these issues?

In some ways the opioid research project wasn't about opioids at all. The opioid crisis is a real problem, and I don’t want to dismiss it in any way, but a lot of times the root problems we saw had to do with even bigger issues, systemic issues, and how our healthcare differs between social classes. We interviewed people who, for example, worked in construction and had been injured at work. And they were never fully able to recover. If someone from a higher socioeconomic status falls off a ladder doing construction, they get better. But a lot of the people we were speaking with didn’t get better. We wanted to get to the core of why and how people use substances differently. To understand the difference between people who were becoming dependent on opioids or people who were using cocaine to numb their pain—versus someone who goes up to Lake Tahoe over the weekend and does a whole bunch of cocaine and is at work on Monday morning.

We wanted to really look at the day in, day out of what it's like to have chronic pain with everything you do. To understand the perspective of people whose voice is not always heard.

A lot of the patients in our study were not physically fit. They were overweight, or they ended up having diabetes. They have social problems because they're stuck at home and can’t work. When you have chronic pain and are disabled, everything kind of goes on top of one another.

A major part of your study included observing the interactions between clinicians and patients—did that field work make a tangible difference in your understanding of the factors that come into play?

Absolutely. In a lot of cases it resulted in the clinician stepping into the role of a de-facto social worker. Patients would say, “Well, I need opioids, but also in the housing community where I live, the elevator hasn't been fixed for weeks and I can't climb the stairs.” It was these small little things that people were coming in with all the time. We specifically chose to work with primary care clinicians because we wanted that day to day interaction that people have with their clinicians—and to understand the clinicians’ perspective as well, and what the stakes are like for them when they’re treating patients who are taking opioids, or who may have substance use issues.

The stigma of opioid use isn’t just limited to patients—it’s something doctors are dealing with too, right? Did that subtext come up your observation of those interactions?

Definitely. For clinicians, there’s a feeling of “We've gotten patients addicted. We, ourselves, are responsible for this epidemic in many ways.” And some of the larger policies that have been put in place nationally and at the state level have restricted the way clinicians can prescribe opioids, and there’s been push back on that from a lot of clinicians, because their hands are tied, they can’t prescribe the meds for patients. But some clinicians actually saw that as a positive, as empowering. It wasn’t their decision not to give patients opioids, it was the result of a larger policy.

Most patients, however, were really frustrated. Many of them felt like their clinicians didn’t trust them—and a lot of them were very close to their clinicians. These were their primary care clinicians. They’re not just talking to them about an opioid prescription, they know about their families and all of their health issues. A lot of patients really loved their clinicians, so that made it difficult. There was this feeling of: “You don't trust me. You know everything about me and now you're saying I can't have opioids.”

In one of the papers you published on the study you describe that lack of trust as one of the unintended consequences of the policies put in place to control opioid abuse. And without that understanding of context, you would have a completely different interpretation of how these policies are working. But you talk about that issue of trust, and how some of the policies put into place actually raised barriers to open, honest dialogue about substance use and treatment.

Absolutely. I think a lot of patients felt trapped. Everything they did was monitored, and not just their interactions with clinicians. It carried on when they went to the pharmacy. We had one young patient in her twenties tell us: “You don't know what it feels like every time I need to get my prescription. People just look at me and judge me, constantly.” It was exhausting for people.

And beyond that, even with some of the technologies that were put into place with the policies that were supposed to help control bias, like urine toxicology tests—clinicians didn’t always have the specific education and training they needed to really understand those tests. And the toxicologist we spoke with admitted that it wasn’t an exact science. And then it gets back to these gray areas of who gets to have opioids and who doesn't.

How do you divorce that conversation from bias?

The goal of having standardized tools and technologies like that is so we can really understand who should and who should not get opioids, and try to divorce that from any bias the clinician may have. But our research shows you really can't get rid of that bias. It's never just about the technology or the scientific tools. The bias is always going to be there. There are always going to be cultural or historical aspects that decide who gets opioids and who doesn't.

Because even with proper education and proper training on all of the tools and systems, it’s still a complicated decision. A lot of these patients have complex medical problems. It’s not just about managing pain from an isolated incident. A number of the patients we spoke with had encountered domestic violence, more than one of them actually told us they’d jumped out of a window to escape a violent situation. So, is their pain from that? Is it because they’re depressed, and their clinician has been trying to get them to see a psychiatrist for six months but because of the safety net healthcare system, it's almost impossible? Is it that they’re overweight? And are they overweight because they live in a neighborhood where it’s not safe to go outside and walk? Those questions end up connecting to things that aren’t necessarily directly related to healthcare, like housing, or food, or transport.

And ultimately, pain is such a subjective thing. To try to use only one tool to measure someone's pain, or as the only factor to influence a decision as to whether or not they should follow a certain medical protocol, is really frustrating and limiting.

You can’t just use a urine test as a magic bullet to tell you “yes or no, you get opioids today.” You have to think about everything a patient is bringing to the table in terms of what their everyday life looks like with pain.

You’re also doing quite a bit of consulting work in the tech and healthcare space, outside of academia.

Yes—we did a project for a multi-national health insurance company in South Africa that was trying to figure out what they could do to better meet the needs of rural farm workers who had HIV. There was a preliminary phase that included interviews with the workers, but one of the recommendations was that they needed to interview the farm employers too. They needed to understand the historical factors at work, and how apartheid and historical racism in the country have affected the relationships between farm employers and workers.

Historically in South Africa, farm workers, the majority of whom are black, have been paid very little (if at all), since apartheid and before that. And the farm employers are largely white males. The farm employers would ask “Why is healthcare our business? We have a democracy now, and a public health system. This should be the government’s purview, or NGO work. Why should this fall upon us? We're farm employers... now that there's democracy, we can barely afford anything. We don't make money like we used to.” You’d hear a lot about “healthcare doesn’t happen here anymore, but during apartheid, all kinds of services were provided.” That was a common argument in South Africa, the idea that “things were better during apartheid.”

It's hard to do those interviews. It's hard to do that analysis. No one ever mentions apartheid and how that shapes healthcare for their workers in South Africa.

If someone was reading the interviews we did with the farm employers about what they thought about their employees and healthcare, you wouldn't automatically think, “Oh, this is South Africa,” but there are slight hints and tones of historical racism that are present. Weird mentions about their workers’ hygiene, and how many of the farm employers view healthcare as something workers should do on their own time, even though in many cases we’re talking about people who work on remote farms that aren’t near anything industrial or commercial; there aren’t an abundance of healthcare options for people.

It’s bringing in that larger context again, both in terms of the underlying historical and social factors at play, but also some of those same everyday factors that you mentioned were part of the opioid equation: how far people are from work, basic needs are that come into play.

Absolutely. And you’ll hear that when you talk to people about healthcare everywhere from the Bay Area to overseas. It’s always about transport. It's always about time lost. The farmers emphasized that the employers didn’t understand they weren’t just at work, working eight hours a day. Their homes weren’t nearby, often because they were historically segregated into communities separate from where employers lived. So they have to fit in healthcare and try not to get sick. And though we were looking at people who had HIV, the largest problems weren’t related to that at all. They had fungal problems that came from working in these super-hot environments. Or in the winter, when it got very cold, everyone would get very sick, which is what happens if you have a compromised immune system. It was small things, it wasn’t how can we fix HIV in these communities? How can we care for people who are living with TB? But more everyday things like how to create a better life/work balance in agriculture that has a legacy of racial inequality on some of poorest sectors of the population, namely people of color. Getting people to understand the importance of some of those seemingly “smaller,” social changes is key. Because you can make all the funding available you want and have the best healthcare system out in this area, but it really comes down to creating a system where healthcare is integrated into the work schedule.

Our work was really about pulling back those layers and trying to get at the more systemic failure and legacy of the apartheid health care system in South Africa. Employers didn't really know where they fit in, in terms of providing care to their workers, post-apartheid. They didn't know what that looked like.

In some ways it’s encouraging even to hear that an insurance company wanted to take on a project like that. A lot of times when it comes to healthcare, people can feel like they’re just a number.

In the Bay Area, I’ve noticed that there's been a lot more openness to understanding qualitative data which is exciting. In healthcare there tends to be a lot of population data, a lot of stats.

But when you're working with huge population data sets, you need to know what it all means. What's happening on the ground, what people's lives look like behind those numbers. Taking that seriously is challenging, but I'm happy to see that a lot of companies and health care providers are trying to move in that direction.

People often joke that healthcare, as an industry, is the last to innovate. But your end user is right there. And harming them has serious consequences. Sometimes in healthcare it can be slow to see results, to see things get implemented, but people are really looking to person-centered care from patients and clinicians. That’s really the only way you can do healthcare. You can have the best clinicians, the best technology, the best healthcare system out there, but at the end of day, it really comes down to understanding clinicians' and patients' needs. People’s needs.