Through Patients' Eyes

Pharmaceutical Executive

Say the word "anthropologist" and most people think of Margaret Mead studying mating rituals in New Guinea. But for pharma, the techniques of anthropology are becoming an important source of information about how patients actually use medicines and how they feel about their physicians, their diseases, and their post-diagnosis lifestyles.

Say the word "anthropologist" and most people think of Margaret Mead studying mating rituals in New Guinea. But for pharma, the techniques of anthropology are becoming an important source of information about how patients actually use medicines and how they feel about their physicians, their diseases, and their post-diagnosis lifestyles.

Increasingly, companies are turning to ethnography, one of anthropology's primary techniques, to provide a new level of detail about patient behavior. Ethnography grew out of the attempt to understand other cultures. But its techniques-immersion, direct onsite observation, and assumption-free interviewing-turn out to be powerful tools for exploring markets. Ethnography's traditional goal is to see a culture through the eyes of the people who comprise it. For pharma, the opportunity to see their products and services through the eyes of patients is worth exploring. This article suggests that adding ethnography's qualitative insights to traditional quantitative market research techniques can help companies develop products, promotions, and educational initiatives that patients want.

Watch and Learn

In the past few decades, anthropology's involvement with pharma has grown out of two trends.

First, there was anthropologists' gradual migration from academia toward industry, where they applied their skills at human observation and contextual analysis to questions about how consumers use products from toothpaste to tennis rackets. For the anthropologists, it was a short step from their traditional areas of research to exploring how consumers interact with brands in stores and at home, how those products fit into their lives, and what generates brand loyalty. Although slower to adopt an ethnographic approach than some other industries, pharma has also used anthropology in market research, especially in determining how patients feel about product messages and ad campaigns and how they interact with doctors.

Second, academic anthropologists discovered medicine as a field of interest. Today, members of organizations, such as the Society for Medical Anthropology, as well as anthropologists working in clinical settings, devote time to understanding illness and the practice of medicine in social contexts: looking at how people around the world think about health and experience disease, how politics and geography affect medical care, and how individuals handle their own illnesses through self-treatment. Pharmaceuticals are an important part of their research.

"We know very little about how people understand their medications," says Mark Nichter, PhD, a professor at the University of Arizona's department of medical anthropology. "But we try to understand what expectations they have for medicines, how they take them, and what factors influence adherence to practitioners' recommendations. We ask questions such as: Does the public take medicines meant for curative purposes as a way of warding off disease or as a form of harm reduction when one feels like they might be coming down with something? There's a wide variety of ways that people use pharma products, some that they weren't intended for."

Melinda Munro, a wife and mother from Horsham, Pennsylvania, offers a glimpse into the emotional impact that her disease has on the entire family.

Today, there's a third trend: the emergence of specialized research firms that use ethnographic techniques to help pharma companies better understand how patients relate to their products. These researchers conduct detailed one-on-one interviews with patients, observe them as they go through their daily routines, and watch and record how they take their medicines. The results are often eye opening. Their techniques let pharma marketers and product developers be the "fly on the wall" they always wished they could be-in patients' homes. Using the qualitative measures of ethnography, pharma can better understand the "whys" behind patient behavior: why compliance and persistence rates are so low, why patients don't do what their doctors tell them, and why patients prefer certain products over others.

Two years ago, AstraZeneca used ethnography to better understand how consumers used its products. AZ worked with Integrated Marketing Associates (IMA), based in Bryn Mawr, Pennsylvania, to interview 15 patients using a particular therapy from their respiratory franchise.

"We all had our own perceptions of how consumers were using our brands, so we were able to check to see if people were using them the way we intended," says Matthew Winkler, AZ's customer insight manager. "For insulin, the questions would be: When did they take it? How did they store it? How often did they take it? What is the environment in which they take it? Are they taking it with other family members around? Is someone there coaching them? Do they take it on a regular basis?

"Those are important questions, information that you don't always find through traditional means. By being able to have that interaction and be in the patient's environment you have an opportunity to see if there are things that they fumble with."

What Patients Really Do

One of the most important things anthropologists bring to pharma research is an almost obsessive concern for distinguishing between what people say and what they do. (See "Caught on Tape," PE, October 2001.) "Never confuse rationale for rationalization; it's a big mistake," says Nichter. "You always have to be aware that what people say they do and what they actually do are often different. There's a lot of self-medication and self-regulation of dosage by patients after they've seen a healthcare practitioner. And there's always the issue of how long patients take their meds."

Matt Miller, a husband, father, and high school math teacher, demonstrates how he parcels out his daily medications for the ethnographer -- and the camera -- in his kitchen.

At a recent pharma marketing conference, Robert Schnee, PhD, a principal of market research company Weinman/Schnee, played a videotape that illustrated the point. The tape showed a patient talking to a doctor and then talking to an interviewer about what they discussed. Then, the interviewer asked the doctor what he thought he conveyed to his patient. The result? It was hard to believe that the doctor and the patient had been involved in the same conversation.

Schnee pursued the point in a speech before an October 2002 meeting of the Advertising Research Foundation, claiming that pharma needs to study the interactions between doctors and patients because of three patient tendencies:

Simplification. Memory stores the gist of conversations, not the actual words. Patients forget key details, including what doctors said immediately before they made treatment recommendations, and how and in what order they described side effects.

Rationalization. Patients often try to explain away their behaviors and conversations to make them sound rational- even if they aren't. "When you read transcripts of conversations you see jumps, mistakes, and inaccuracies that people edit out when they report what happened, making the flow sound logical even when illogical comments drove the decision," says Schnee.

Image management. Patients try to fit their actions into norms that they believe are professionally and culturally acceptable. They will offer a "cleaned up" summary in verbal reports that can disguise what actually happened during the interaction.

To get past what patients say, ethnographers learn to be keen observers, attending to details, such as body language, that the average person might not notice or deem relevant and asking probing questions that lead to unexpected answers and observations.

For its practitioners, one of the most interesting things about the ethnographic approach is the unexpectedness of its findings. "I don't think I've ever been in the field for any project and not come out surprised about what we learned," says Melinda Rea-Holloway, vice-president of Ethnographic Research in Kansas City, Missouri. "Once you go into someone's home or their workplace, once you let them know that there's no agenda, that we're just there to understand what life is like for them, that opens up a lot of doors. We don't walk into the field with a questionnaire or a clipboard. We have a list of general, guiding questions, so I can understand what the challenges are for this person and make sure I understand what their daily lives are like. Other than that, I don't really have an agenda."

Holloway and her colleagues try to see patients in as many contexts as possible. "It's more complicated than just patient and doctor interaction or being in someone's home during the time that they're supposed to take their medications," says Holloway. "We need to watch the healthcare professional and the patient interact-but we also need to go home with the patient and try to be there in the morning, in the afternoon, in the evening. We need to go with them to physical therapy, be there with them around family members or other support networks. We try to let the patient direct us, to show us where those moments are.

"We like to be there long enough so that we're hearing repetition and not learning new stuff. So it depends on how strategic the project is, how open-ended it is. Sometimes we're hired to answer some very tactical questions and sometimes those can be done in a matter of three or four hours. Sometimes we're hired to focus on strategic questions, such as 'What is this person's daily life like?' We have to go back multiple times over a several-month period to really understand that."

The Real Thing

Last July, Pharmaceutical Executive got a chance to experience ethnographic research firsthand. Guided by IMA principal Frank Pulcini and senior project director and in-house anthropologist John Wendel, PhD, the day began in the living room of Matthew Miller, a 45-year-old high school math teacher suffering from Type 2 diabetes and postural syncope, a condition in which patients faint from low blood pressure upon standing. Wendel identified Miller as a subject through a focus group in which he participated months earlier and paid him $300 for his time and candor.

Experienced ethnographers interview subjects until they begin repeating themselves and the surprises stop.

A two-man camera crew worked to position Wendel and Miller as they fidgeted with their microphones and chairs. When everyone was ready, Wendel flipped a page on his clipboard and began asking questions. No printed questionnaire could have elicited what Miller revealed: that his wife diagnosed his diabetes; that he misses his "past" life, before diabetes; that he misses his "drinking buddies," and regrets that his lifestyle and obesity were the likely causes of all the unpleasant changes he now lives with. His emotion was palpable as he answered Wendel's litany of questions, including but not limited to:

  • What was the impact of your diagnosis on your family?

  • What was the impact on your social life?

  • Has diabetes made you a different person?

  • What kind of medical specialists do you consult? Why?

  • Do you care how your medications work in your body?

  • What do you want your doctors to know about your life?

  • What are your fears?

Even Miller was surprised at the candor of his answers. He said he never would have talked that way ten years ago but that it felt good now. When asked if pharma companies should communicate more with patients, he said, "I would welcome more education, more interaction with other people suffering from the same ailments. I'm not sure that the companies give the public the right impressions. There are no miracle drugs."

In one particularly telling moment, Miller revealed some of the powerlessness he feels, saying that he wished pharma companies would do more to help patients eliminate the need for their products altogether by "pushing" them to take control of their lifestyles and habits through behavior modification, advice about diet and exercise, and other alternatives to medication.

When asked if medication was a friend or foe, he said, "Friend. It gives me security and offers a way to maintain the lifestyle I've become accustomed to. It provides a more comfortable view of the future. I've become dependent on the medication for these positive reasons but also negative ones, because I've become much more lax in my lifestyle than I know I should be."

It's unlikely, say Wendel and Pulcini, that a patient would admit something like that on a survey questionnaire. Certainly, the emotions involved would not be as obvious as they are when captured on video. The real value of the interview format is the depth of questioning it makes possible, allowing researchers to really listen to what the subject is saying and to watch his body language and facial expressions. Wendel kept going until Miller's answers became repetitive, and then everyone went into the kitchen to see where he keeps his medications, to learn how and where he tests his blood sugar-in the bathroom-how and where he takes his medications, and other details of his daily routine.

Pulcini, a 24-year veteran of the pharma industry, asked Miller if he knew who makes the Actos (pioglitazone), Glucophage (metformin), and Lipitor (atorvastatin) he takes every day. He had no idea. Then he asked him if he knew the name of the company that makes his blood-monitoring device and he got that name partially right. That, Pulcini believes, is one of pharma's biggest problems, admitting that he's not certain whether or not the industry welcomes such anonymity.

With the camera capturing his every move, Miller showed his audience how he puts every day's pills into a seven-day pill organizer. Asked whether the pharma industry is a friend or foe, he says, "I have no adverse feelings toward any one company. But it's a pretty big money-making industry that puts a band-aid on most things and people become dependent on them."

Three hours later, it was finally time to move on to the home of the next subject: Melinda Munro. A Horsham, Pennsylvania wife and mother of three adult daughters, Munro was forced to quit her job with Merck Medical

Affairs a few months after suffering a heart attack. She, like Miller, has Type 2 diabetes, but she also suffers from asthma, depression, and several cardiovascular conditions. Two of her daughters participated in the interview, offering an in-depth view of how their mother's illness affects the family.

Munro took a minute to list the medications she takes: Lipitor, Humalog (insulin lispro), Lantus (insulin glargine), Singulair (montelukast), Lasix (furosemide), Lopressor (metopralol), Diovan (valsartan), Celexa (citalopram), Xanax (alprazolam), aspirin, and "a bunch of vitamins."

Later, discussing Munro's situation, AZ's Winkler said that she is the ideal patient from whom to learn, because she resembles so many others who are on multiple treatments. He remarked that Munro is the type of patient from whom companies can find out if patients are applying their knowledge about a different product to their own. "There might be a medicine they're supposed to take twice a day," he said, "and they've mistaken it for yours." He added that patients may easily confuse medical devices, such as inhalers, and pills of similar colors, and that they don't even realize it until they're being watched.

Although Munro said she doesn't consider herself a "sick person," she realizes her illnesses have taken a heavy toll on her family. But that's an understatement.

In their comments, her daughters used the words "angry" and "scared." In fact, one daughter-still in her 20s-had already undergone bariatric surgery because she feared meeting the same fate as her mother.

Wendel asked Munro if she felt she was getting what she needed. She said, "I get what I need because I ask questions. I want to know what's in the medication, what it's going to do to me, how it will interact with other drugs. Most people don't ask those questions and don't even know that they should."

Small-Scale Studies, Big Results

Key Findings

Pulcini observed that both patients interviewed said they were fearful of the potential morbidities and mortality associated with their conditions but that they didn't connect medication use with the prevention of those things. That was one of the many observations included in a report that IMA developed, which accompanied a 20-minute video that deftly conveyed the intimacy of the interviews and highlighted key findings such as:

  • patients' physical deterioration caused by their conditions

  • the impact of illnesses on patients' personal and social identities

  • patients' lack of knowledge about their illnesses, medications, required lifestyle modifications, and educational resources

  • a significant disconnect between patients and physicians

  • patients' awareness of how important medications are in their lives but not why they are important.

The report suggests that pharma's exploration of other issues might lead to the development of more targeted and useful patient education materials, DTC ads, and public relations campaigns. Some of those suggestions are:

  • Determine the relationship between a patient's diet and exercise and compliance.

  • Identify the barriers to patients' acceptance or non-acceptance of medications in daily life and how they can be helped to feel that taking them is second nature.

  • Dig deeper into parents' fears about their children inheriting their medical conditions.

  • Understand the struggle to do everyday tasks and its relationship to a patient's medical condition and medications.

  • Consider folk understandings of medical conditions and how medications work, such as inaccurate assumptions that all medications can lead to drug "tolerance."

  • Address specific issues of ethnic groups at high risk for particular conditions.

"Sometimes you find that patients use products in unexpected ways," says Pulcini. "And that may lead companies to seek new indications for that product."

He cites GlaxoSmithKline's asthma treatment Advair (fluticasone and salmetrol) as an example. "The doctors wanted it for chronic obstructive pulmonary disease, so the company went after the indication."

Other suggestions focused on communication. IMA recommended that companies do a better job of explaining to patients what medications actually do for them, target the entire family for support in encouraging patient compliance with treatment and lifestyle modifications, and create advertising tied to simple cause and effect, such as: "Does your waistline measure more than 40 inches? Then you are at higher risk for...." They also recommended that companies cultivate stronger long-term relationships with patients, not just to foster loyalty to their brands, but to create good will for the company.

Pick the Right Partner

Ethnographers may not be as ubiquitous as their traditional market research counterparts, but there are a growing number of companies that specialize in it, largely relying on medical anthropologists who left academia or public service. So it's important to know what to look for in a potential partner. Here are three tips:

Be sure they understand the purpose of ethnography. Even the most experienced researchers, many of whom can count tens of thousands of hours of interviews in their career, say they ask questions until they're not surprised by what they hear anymore.

"What we do is very inductive," says Holloway. "That means when we go into the field, we assume we don't know very much. We really do go into the field without many preconceived notions about what we're going to find and we try to let the patient or the participant guide us in the right direction and to show us where the challenges to adherence are."

Clients should have open minds, too, says Winkler: "We wanted to see what we could see-very grassroots. We tried not to have any preconceived notions about what to expect. We thought what we would get from this was a better understanding of our patients' knowledge about their disease and the use of our products." If they learned that there were problems with the devices themselves and how patients use them, he explained, it would indicate that the company should develop a new patient-training program for healthcare providers designed to overcome those problems.

There's no such thing as a flat fee. Ethnography budgets depend on the project's scope and duration and can range from $100,000 to $250,000 on the low end of the spectrum. If a project requires the participation of dozens of patients, and the research follows them over a span of several months, the price tag will reflect it. But companies shouldn't let sticker shock be an obstacle to trying the research tool, because they can use the results to satisfy other needs.

The IMA team suggests that companies re-purpose video from ethnographic research projects to add value

to their relationships with physicians by creating "360-degree feedback" material to show during medical education events. It can also aid in patient diagnosis and treatment. Other uses include high-tech versions of patient education DVDs or CD-ROMs; sales force and agency training tools; and b-rolls for infomercials, video news releases, and documentary television programs.

Seeing is believing. There's no reason a research team can't demonstrate its process up front. They should be able to make a presentation to a potential client similar to the presentation they would make to a real one.

Desired Outcomes

Ultimately, all market research is done to determine whether a change in direction is necessary to maximize a company's product development and promotional efforts. Winkler says the project that IMA did for them was "very eye-opening for the team. We had ideas about areas where we could improve, and this allowed us to reprioritize our work. It was very powerful information that we presented to our management team, saying that ultimately we're here to produce products to improve healthcare. So if, based on going into patients' homes, we learn that we can improve upon specific areas, it will benefit both the healthcare community and our company because if the people learn how to take products better, they become more compliant. That allows them to be more satisfied with a brand and, at the same time, have better medical outcomes."

When AstraZeneca first initiated its ethnography project, Winkler's team realized that it was time for the pharma industry to get involved and find unique ways to understand how consumers use their brands. He says, "One of the biggest issues we face in the industry is patient compliance, and this is a great way of understanding where the problems are and what we should be doing to help." He adds that companies can use findings from this type of research to help educate physicians about their patients: "If you think about physicians having just a couple of minutes with their patients to discuss their disease, this is a forum from which we can communicate back to the physicians what we've learned and say, 'We gained insights from some of your patients; these are some areas in which they have concerns.' Together, pharma companies and the healthcare community can find ways to fix the problems."