Human beings make some strange decisions. According to the WHO, one of the principle reasons for transplant rejection is non-adherence to immune suppressants. Studies have indicated that more than 20% of transplant recipients do not adhere properly to their medication.
In the case of many other life-threatening diseases, adherence rates can fall below 50%. Why?
Stakeholders in healthcare have carried out research about the patient experience for a long time. Patient pathways are often examined in detail, and a number of good frameworks exist to help explain what that experience is like. Traditionally, though, most of that research was about the patient, not about the person with the disease.
That seems contradictory, aren’t the two the same? After all, you can’t be a patient if you don’t have a disease. True, but the person with the disease is more than just a patient. We are mothers, fathers, business people, husbands, wives, and amateur butterfly collectors. Each of us is unique, and our sense of self is constructed out of the different identities we assimilate.
When a person is diagnosed with a long term chronic disease; that person finds another identity added to the mix, an identity they would very much like to abandon, or at the very least, forget. Now under their new identity as a patient, the person has to regularly visit healthcare professionals, undergo all kinds of intrusive tests, and take medication. If you study the “patient journey” then you can start to get a pretty good idea of exactly what that patient goes through, when, and with whom. This is very important to understand, particularly when your aim is to treat the patient through better diagnosis, because whenever that person is in front of a healthcare provider they are indeed a patient.
However, when you’re dealing with medication adherence, it’s not just the patient who makes the decision. A person with a chronic disease is going to decide whether to follow their treatment, or for that matter, whether even to go see the doctor, before leaving the house. At that moment, that person is not a patient. You expect them to drop their original identity in order to assume the hated mantle of the patient and to do what their doctor told them to do five months ago.
If you want to begin understanding the decision making process of that complete person, with all of their different and complex identities, then you’re going to have to undertake a different kind of research. What we’re really talking about is an individual’s “personal culture”. In this case, the best type of research to employ is the kind that has been designed for it, in other words, ethnographic research.
Using photo elicitation
Ethnographic research has been around and formalized since the beginning of the 20th century. While it is a branch of anthropology, ethnography focuses on the relationships of individuals with their culture, and from a research perspective, tends to rely on embedded observation of people as they go about their daily lives. Many famous ethnographic researchers spent years living with the groups they were studying.
There are a number of challenges with any research project employing ethnographic techniques:
- The Hawthorne Effect. This is a fancy way to point out that when you observe human behavior, you are directly affecting it, and therefore it is very difficult to ascertain how people actually behave when they are not being observed.
- Observer bias. Because ethnographic studies tend to employ constructivist epistemological stances (they approach research with few pre-conceived frameworks) and because observers are often embedded as much as possible into the subjects’ lives, they are more prone to observer bias in reporting findings. The ongoing controversy about Margaret Mead’s work in Samoa, still unresolved after almost half a century, are testimony to this.
- Study length. In an effort to address both the first and the second problems, researchers often live closely with their subjects so that they can be assimilated as much as possible into daily life. Most pharma companies seeking to carry out patient research would prefer not to wait for years.
- We are dealing with intimate details of a person’s life, and by definition, the subjects are suffering from disease. It is easy to be too intrusive when searching for behavioral drivers and it is important to respect each and every subject to the utmost.
A thorough examination of ethnographic techniques would take up at least one book, and if you’re interested, there are a number I could recommend. Our aim here is to examine one of them, one that we find particularly well suited to the objectives of those seeking to understand patients.
Photography has been used in anthropological research since the beginning of photography. Its formalized use in ethnographic research can largely be linked to John and Malcolm Collier in the 1980’s, who coined the technique photoelicitation. They realized that on top of documenting a situation, photographs used during interaction with subjects led to much more vivid and engaged discussions.
Photo-voice is a newer form of photoelicitation. In this technique, the research subject him or herself takes photographs and then talks about them with the researcher. In 2005, Samantha Warren, an early proponent of the technique pointed out:
“The process of making a photograph probably tells us more about the photographer than what he / she has chosen to photograph given that the particular visual cultures they are bound up with will shape their choice of subject, how they locate the subject within the frame, and what they choose to leave out.”
When using the technique, subjects are typically given a disposable camera and asked to take pictures that typify, for them, the topic; for example, “living with diabetes and insulin treatment”. The pictures are developed and the researcher then sits with the subject to ask about them. In reality, it’s less the images themselves that are analysed, it is the explanation of them. For example, we have seen an image of two paths crossing that gave rise to a discussion about choices that have to be made; an image of an old sofa that represented for one patient her inability to get out of the house and her frustration with spending the day immobilized at home… just about every picture brings forth a flood of sincere emotion.
For patient research, the advantages of photo-voice have proved to be even more telling than in other domains. We have used the technique a number of times and have recognized the following benefits:
- Patients feel empowered to tell their own story. Instead of being led by a researcher to answer specific questions… despite the fact that researchers have a briefing that has specific objectives
- The depth of response is much greater than without the photographic support
- The researcher achieves a great degree of day-to-day information without having to be “embedded” into the patient’s life
- Since the researcher is not physically present when the photos are taken, the Hawthorne effect is minimized
- The pictures themselves can be compelling when reviewing the research results with others
Photo elicitation in general, and particularly photo-voice can help researchers to get an idea of the full person, not just the patient, in a relatively rapid time frame with in-depth discussion about even delicate subjects, while empowering patients to tell their own story, in their own way. It is an ideal technique to gain a broad understanding of life with a disease and can serve as an excellent foundation on which to build to understand and influence behavioral drivers.
 Warren, S. 2005. “Photography and voice in critical qualitative management research.” Accounting, Auditing & Accountability Journal 18:861–882