About the Expert:
Dr. Danya Glabau is a Medical Anthropologist, Founder of Implosion Labs, LLC, an ethnographic research and consulting group working with clients in health care and technology, and Adjunct Instructor in the Technology, Culture, and Society department at NYU Tandon School of Engineering. She is the Co-Chair of the Science, Technology, and Medicine special interest group of the Society for Medical Anthropology and Co-Organizer of the New York-based QX MeetUp Group
“The Moral Life of Epinephrine in the United States”
This was an article that initiated some other workaround for patient advocacy and healthcare for food allergies patients. This piece was looking at epinephrine auto-injectors, specifically which are these devices, a drug-device combination that administers a dose of epinephrine for a person who is experiencing an allergic reaction. You might have one of these prescribed if you have food allergies and potentially if you have an allergy to certain drugs. The way it works is it’s kind of a spring-loaded mechanism about the size of a sharpie marker and if are experiencing an allergic reaction you can surge a bit into your leg, it will release medication epinephrine which we also know as adrenaline that very rapidly reduces the symptoms of the allergic reaction.
What I found when I set out to do my research was that I would sit down to talk to people who had food allergies or parents of food allergen children and just ask them to tell me about their experiences with the condition. Very often the conversation would end up being about these epinephrine auto-injectors. People felt very attached to them because they relied on them in such cases to save their lives, so they were a central part of the patient experience with food allergies. That caught my attention and I wanted to spend a little bit more time thinking about all the different ways that they impact food allergies.
The article follows the device itself, through the different ways that patients use it, encounter it and learn about it. We kind of start off in the clinical encounter; how the physician introduces this device, how do they educate them (patients) on it, what the patients take away from that interaction which isn’t always what the physician intends. Then from there how does this device affects their relationships in their communities, relationships with schools if they have allergic children and how it affects family relationships.
I end the piece by looking at how talking about epinephrine auto-injectors is a key aspect of how the food allergy community builds a community. People with allergies and parents of food allergic children spend a lot of time talking about these devices and how they save their lives, exchanging news, exchanging updates about food research or new devices on the market. So it’s a way for people to connect by talking about their shared experience around this technology and build a community which then has other effects as well.
As an anthropologist, I’m using what is called ethnographic methods. It’s a very open-ended research method in some ways, where you kind of go in and talk to people, some people call it deep hanging out. You follow people through their daily lives and really understand what they think about their lives and you observe what they do, and sometimes there’s a mismatch. This is a method that I use for researching food allergies and for my more recent research as well. A Lot of my research was interviews with people, attending food events, allergy advocacy events, and things like that.
I think that it reveals a side of medicine that we often overlook. We talk a lot about the economics of health care, investments, cutting-edge technologies, but we don’t spend as much time I think as a society sitting down and listening in detailed ways to how people experience their and patients’ experiences. I think these kinds of ethnographic deep hanging out methods, let you get inside of people’s lives and understand what it looks like from an everyday perspective, to be dealing with the medical industry to be learning about medical treatments, to be a patient.
There are a lot of ethical and moral questions, you know the title of the article the moral life of epinephrine, in the United States kind of gives that away. I think one of the places where there’s maybe more of a dilemma is when patients are faced with emergencies when they are starting to experience allergic reactions and making the decision of whether or not to use their auto-injectors.
One of the big dilemmas that people face is cost, so these devices have become more costly over the past ten years or so, and using one might eventually cost a person several hundred dollars out of pocket to replace it. There’s often a calculation nowadays for people who are deciding, is this serious enough to need the injection, serious enough situation that I can afford to pull out and replace this device for the next time.
Another dilemma and one that we faced by adults with food allergies is that of trying to decide whether to use the auto-injector and to get the appropriate follow-up treatment which means they are not going to be able to follow up on responsibilities for the rest of the day, probably will have to go to the ER, they might have a follow-up doctor’s visit, they might feel very tired after using the medications, etc. There’s always this decision-making process about “can I let down all of those people in my life, can I sort of skip all those other issues to take care of myself”. From the outside it’s easy to say yes, of course, you should, you should always put your health first but when you are a person balancing a lot of responsibilities it can be a very difficult decision.
Part of the reason why I draw on Sharyl Mattingly’s work is that she does a really good job thinking about the clinical encounters between patients or parents of patients and physicians. One of the things that are at stake is socioeconomic factors. It might be in obvious ways in that a doctor is recommending that a patient get a treatment that the patient sure knows that they can’t afford or their not sure that they can afford. That might make them a little bit suspicious, a little bit hesitant in the interaction and the doctor is not necessarily going to know why, so there’s that level that I think it’s really important for physicians to keep in mind.
There’s this other layer of different understandings of what is right and good. This kind of moral question, for a patient there’s a lot of things that they might be thinking about, what is a good treatment. It might be a treatment that doesn’t have too many side effects so that they can keep living their lives, it might be a treatment that does treat long term potential outcomes of a condition, a treatment that is accessible to them financially, or is offered in a location that convenient where they can take a reasonable time off from work where they won’t lose their job to access the treatment. There are all of these factors some of them are tied to society, economics, or community expectations about involvement in community or family events. I think these often get lost in the patient-physician encounter, especially nowadays when we’re crunched for time, as physicians might be trying to fit in six or eight patients in an hour.
The hospital or clinical facility is a context for a lot of these interactions and it structures what can happen in doctor-patient interaction. That means that it also structures how patients encounter information about their condition, treatment, and therefore can shape how they feel about it and what they feel is accessible to them. In a way, we might think of the doctor-patient interaction not as starting when the doctor-patient sit down together, but it’s starting as soon as a patient walks into a facility. There’s the question of how do we structure healthcare delivery in terms of diagnosis, treatments, and prescriptions, but also do we structure the entire experience of being in a healthcare setting for a patient.
One way that people are starting to think about this especially in Europe, is through the lens of something called services-time. Therefore thinking about what does a service look like from the person using it, so in this case from the patient perspective and how do we drill down into all of the different steps, all of the different encounters that the individual has from their encounter with the space, their experience in the parking lot, their experience with the receptionist, biller, as well their experience in the clinic room and with their physician. How do you kind of drill down and make all these areas work in the best way possible?
Some of these solutions might be technological, technological infrastructure, it might mean having the right digital or EMR tools to make interactions seeming-less. Some of those might be on the side of personnel and training and making sure people are knowledgeable about their particular role but also a little bit knowledgeable about the other roles of the people in the office so that they can facilitate the person getting what they need within the context.
Some of that depends on the medical knowledge of the providers; the physicians, nurses, nurse practitioners, physician assistants, laboratory technicians, and so on. Ensuring that you have the right cast of characters and the right kind of expertise to provide the service that someone needs when they walk in. I think that’s a really important way to be thinking about healthcare delivery, we should be thinking about health care facilities right now.
The other piece is, what is the patient prepared for, what are they educated about? In the case of epinephrine auto-injectors, there’s a lot of support for patient education and patient preparedness from the pharmaceutical companies that produce these devices, as well as from a host of patient advocacy organizations. On the pharmaceutical side, educational videos are demonstrating how to use the device. On the patient advocacy side, some advocacy groups directly provide educational materials like Forbes For Schools or colleagues to learn how to use the device, videos demonstrating the device, webinar series talking about updates and developments and new improvements as well as support for local support groups. There are a couple of organizations like Kids with Food Allergies or the Food Allergies Research and Education Organization Fair that both support local support groups where individuals who are facing a new diagnosis themselves or in the family can go find local experts, learn about these techniques, etc.
One of the things about food allergies is patients being prepared with epinephrine auto-injectors, being ready to use it is one piece of a much larger puzzle. There are a lot of steps that come before that where you could be preventing an allergic reaction in the first place. Things like;
Asking the right questions of your waiter when you eat out.
Learning how to read a food label to know all the different names that your allergy might go by to avoid it.
Knowing which brands might be manufactured in a facility that might be safe for you, which brands might not be.
Changing your cooking techniques, kitchen organization techniques to make sure that foods that are safe for you are isolated from materials that might not be.
Medicine isn’t just about treating our bodies, by treating our bodies it lets us be full social, moral actors. Appreciating how complex and difficult that is I think could heighten the respective importance of medicine and medical care in some ways. In the case of food allergies, a really big part of treatment or prevention strategies is community-based. It is making sure that chefs and cooks in your community know enough about food allergies to respond when someone in a restaurant says they have a food allergy.
It’s about teachers and schools employees knowing enough about food allergies to know how to adequately clean tables or desks and classrooms to make sure that there’s no peanut butter smeared on a desk or something like that. There are a lot of community steps that can be taken around food allergies in particular but again I think that that’s not how we typically think of medicine and illness in the United States.
We typically think of it as an individual problem that is in an individual’s body but there are all of these social and community issues not only about how we get treatment but also about how to prevent illness. Each of us can be more appreciative of that and more interested in saying, “okay is there one or two small things that I can do in my behavior that will make it safe for someone else” that will make someone else live a more healthful productive life.
I think patient advocacy is becoming a bigger and bigger part of the healthcare environment, especially in the United States. It’s also becoming increasingly consolidated and more professionalize so there’s a lot of back and forth between patient advocacy groups and healthcare groups like insurers and pharmaceutical companies. In some cases becoming more closely aligned with pharmaceutical companies.
I think that’s good because it gives some of these groups a larger reach and a voice in healthcare. However, I also think it’s very important to consider how can we maintain the independence of patient advocacy and how can we make sure that it’s representing the interest and needs of patients. Rather than the interests and needs of these actors who are well represented in the healthcare system. I think that’s a challenge for patient activists, how to grow but maintain that fidelity to the needs of people who don’t necessarily have a voice.