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Five challenges ethnographers face in health care settings and how to overcome them
It’s not our imagination—observing health care provider/patient interactions was simpler when Ethnographic Research, Inc. opened its doors in 2001. This was before HIPAA’s Privacy Rule, its Security Rule, and its HITECH Rule all went into effect, and although these are all important and necessary, the required processes and paperwork can be intimidating for our clients, for the HCPs we meet, and for us too.
This article will highlight some of the challenges involved in doing observational research in health care spaces and provide some insights into how we have adapted and continue to do work in these settings. Whether you’re a researcher or you are thinking about hiring ethnographers to observe health care in action, we hope these provide you with some food for thought.
1. Getting your foot in the door is difficult.
HIPAA regulations can make recruiting an enormous challenge; the HCPs have to trust that we, complete strangers, will treat their patient data as sacredly as they do. Even without HIPAA, HCPs would likely be uncomfortable with the idea of folks showing up at their work with cameras. That’s true of any workplace, particularly customer-facing workplaces. By letting us in, they’re vouching for us and that’s a risk for them.
Compounding the challenge are gatekeepers, usually office managers, whose job it is to filter the calls that make it to the decision-makers, usually physicians. This is another uphill battle, a kind of modern-day gauntlet. Finally, these are busy places, and they simply don’t have time for us. We have to convince them that we’ll be as little of a bother as possible and that their practice can function almost as efficiently as it normally does.
What is the secret sauce to recruiting health care providers? Persistence and an indestructible will. Also, although it isn’t always practical, we have found that recruiting in-person can go a long way in showing sincerity and resolve. When dealing with a tight timeline, getting the help of a third party recruiter can also be a viable option.
2. Incentives can be complicated.
HIPAA isn’t the only regulatory barrier we contend with doing healthcare research. There’s also the Sunshine Act, and although it sounds very pleasant, it can make incentives for participants a little tricky. The Physicians Payments Sunshine Act is anti-bribery legislation designed to keep pharmaceutical companies and others from incentivizing physicians to prescribe their products. It seems totally removed from ethnography, but we have to make sure that any incentives we pay health care providers don’t top fair market value.
As a result, our incentives are never so much that they will really drive HCPs’ participation. So, again, we need to make sure that participating in our research causes as little inconvenience as possible and that their time with us is, if not loads of fun, at least mildly interesting.
3. Be careful what data you collect.
Once we’re in the door, keeping the data we collect safe and sound is always our top priority. It is essential for everyone involved: the patient, the practice we are observing, our client, and our company. The first step is to only collect patient data when necessary. This can be hard if we’re videotaping the research. Here, video’s greatest strength, that it records everything, becomes its biggest weakness, that it records everything. Like a vacuum cleaner inhales random coins, hairpins, and the occasional sock, the camera is going to record off-camera conversations, random patients walking in front of the camera, and computer screens displaying patient data. We minimize this by:
- Not recording in hallways and waiting rooms whenever possible (where other patients tend to roam).
- Being far enough away from computer screens that they aren’t legible on the recording.
- Only having the camera on and recording when necessary.
- Being careful not to record patient data unnecessarily (e.g., if we don’t really need to record a patient’s face, we don’t record their faces).
Also, we get informed consent from anyone whose data we collect so they know what we’re collecting and how it is going to be used.
4. Be careful how you store and transmit your collected data.
After we’re done with data collection, that data needs to stay safe. It is important to have solid security policies ahead of time—multiple layers of protection in place to prevent unauthorized access. It helps to enlist a professional with a background in information security to make sure that everything is airtight.
5. You may need to take a few extra steps to protect your clients.
All of our clients have different needs when it comes to regulatory compliance, and it is best to discuss their needs from the start. Again, we make sure our planned incentive won’t cause our client any unnecessary hassle. We also see whether our client needs the study to be blinded or double-blinded. Like other industries, it is common for health care clients to want their identity withheld from participants. That might make recruiting more difficult, but it is fairly routine. If they need the research to be double-blinded, for whatever reason, we need to take a few additional steps. We will need to remove names and other information that may identify the practices in anything we give to the client, including initial sample spreadsheets and final reporting. We’ll also need to mask all of the video in the video deliverable. This includes participant faces, ID tags, and any paperwork with the practice’s name on it—it is always surprising how many identifiers need blurring. Understanding a client’s needs from the start is extremely helpful in preventing bumps down the road as the research unfolds.
So those are five things to be thinking about when undertaking in-context research in health care settings. It can be a challenge for sure, but there are ways you can navigate the challenges and get the job done. The insights possible from seeing health care providers in action are very much worth the effort.
Some of our favorite theories for doing ethnography in health care spaces
At Ethnographic Research, Inc., we always emphasize the value of social theory in ethnography and its ability to add depth and nuance to our results. It is like having the ghosts of sociology’s past prodding us to consider looking at our data this way or that way, just in case there might be a big insight around the corner. Research for the health care industry is no exception. In fact, given how challenging in-context observations of health care settings can be, it’s a crying shame not to make the most out of that data. That’s where theory lend a hand. There is a ton out there, but here are a few theories we tend to use the most:
Stigma: Emile Durkheim, Erving Goffman. Stigma is an essential variable to consider when we do projects on living with an illness. Sometimes the stigma is the result of the physical effects of an illness, its accompanying behaviors (like injecting insulin in public), or by just having the illness (like a sexually transmitted disease). The impact of stigma can be as traumatic as the physical effects of the illness itself, and Durkheim and Goffman helped us understand these dynamics.
The sick role: Talcott Parsons. Talcott Parsons’ functionalism hasn’t necessarily stood the test of time, but we still use his idea of the “sick role.” The basic notion is that when we’re deemed “sick” and take on the “sick role,” we’re excused from normal responsibilities while also being required to work towards getting better. For us, we often use it more broadly in examining how having a specific illness impacts a person’s social roles and their engagement with the world around them. Given our long history of studying different conditions, we can then compare the “sick role” of X illness with the many other illnesses we’ve studied in the past.
Gender theory: Simone de Beauvoir. We always make sure to attend to how gender roles impact the interactions and behaviors we observe. You could pick many influential gender theorists, but de Beauvoir was one of the first to draw the line between sex and gender, and this idea of the social construction of gender is arguably the fundamental starting point of most or even all current gender theory.
She also wrote that women and their bodies were the “inessential other,” deemed both alien to and lesser than men and men’s bodies. We can see this in women’s experiences of health care. In a study we did on a rare, difficult to diagnose illness, women, in trying to find out what was going on with them, weren’t taken seriously by the HCPs. Their physicians downplayed their symptoms as “just stress” or “just needing to lose some weight” when they had a condition that would be fatal if left untreated.
Presentation of the self: Erving Goffman. Goffman is back for a second round! For Goffman, when we interact with others we act, as if in a play, and our choice of words and our body language are designed to convey a certain image to the person we’re interacting with. This concept is essential when trying to decipher the interactions that patients have with their health care providers. It helps us make sense of how both sides communicate and how those communications are interpreted, which ultimately shapes treatment decisions and patient outcomes.
These interactions usually play out in the exam room, what Goffman would call the “front stage,” the stage that our clients tend to be most interested in. We always argue that we should also observe the “backstage,” their offices, labs, and break rooms, to see what HCPs are doing outside of direct patient care, to see how they interact with other staff members, and to get the entire picture of what’s involved in their day’s work.
This front stage and backstage distinction of Goffman’s is also important when we study the experiences people have with their illnesses away from the doctor’s office. It’s our job to understand how the public face of someone’s experience of an illness might differ from the private, backstage experience they keep to themselves or just share with their closest friends and family. It is often only in this backstage space where we can see what’s really going on.
The quantified self: Deborah Lupton. Just so we can include something from this century, the quantified self has become a more influential theory in the last couple of years in both our health care research and our technology research. It basically explores how we are increasingly measuring the wellbeing of our bodies with numbers. The most common example is fitness tracking (e.g., FitBits and Apple Watches), but you can see it elsewhere, like assessing diabetes status through the numerical output of a glucometer.
The quantified self can be considered a kind of extension or offshoot of the “medicalization of society,” another valuable theory from the previous century, the 70’s. It contends that more and more aspects of our lives are falling under the umbrella of medicine. A classic example of medicalization is giving birth. Where once done with family in the comfort of the home, now having babies in hospitals is the norm. Medicalization comes up periodically in our research too, like a project we did on Restless Legs Syndrome (RLS). Our participants’ friends and family didn’t take RLS seriously; they didn’t believe it was a real condition (rather the result of the medicalization of society). This led our participants to feel the stigma of having a “fake” condition and it impeded their ability to take on the sick role.
Often we combine these theories in our quest to understand and organize our fieldwork, our analysis and our reporting. What are some theories you love to use in your work?
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