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Look beyond the label

Patients are people first and in order to communicate effectively with them, the person behind the disease must be properly understood

A label with 'My name is...If you took a sample of your friends or acquaintances and asked them to describe you, what would they say? I suspect the answer would depend on how you interacted with those people. For example, those on your football team might say you were competitive and sociable, your office colleagues might say you were good in a crisis, fellow parents at your child's school might say you were liberal and generous. So who is the real you?

The answer is that different stimuli lead people to act slightly differently and each of those groups of friends only sees a certain side of you in a specific situation. The real you is the amalgamation of the whole, plus possibly a bit more.

The same is true of patients. When someone is diagnosed with a disease, albeit a long-term condition, such as diabetes, that person then becomes part of the patient cohort of diabetics. But this is only one aspect of that person's life.

It may be the case that it is a very important aspect, and it may impact other elements of life, for instance lifestyle and eating habits, but labelling someone as a diabetic only provides part of the picture. Nobody would ever claim that he or she understood a person just by looking at that person's eating habits, so how can one understand a person just by looking at the condition he or she has?

The pharmaceutical industry must stop thinking in terms of patients, and consider people instead. Often, people do not think in a linear or logical fashion. It is OK for people to consider that they have healthy lifestyles when the contents of their fridge tell a different story. It is OK for people to be influenced by multiple sources, their friends, family, celebrities, royalty or the media.

And it is OK for people to feel different emotions on different days or even on different hours. At present, I am in a positive mood, but something may happen to change this. However, diseases are not considered in this way; they are looked at logically and consistently and they rarely follow a contradictory, random path, unlike people.

So how does this knowledge change the way we consider people who also happen to be patients?

A lot can be learnt from looking at how FMCG companies get an understanding of consumers, or people. For example, where would chocolate company employees, worried about the explosion of type 2 diabetes and wanting to know if they had the right to function in the health and wellness space, start?

I would recommend undertaking a 360-degree view of the diabetes world and the environment in which diabetics find themselves. This would include understanding it from a physician's perspective, talking to psychologists, academics and even diabetic chefs. The company should also look at where diabetic people go or live. This could include nursing homes, gyms and health food stores. The focus would be on understanding people in their environment, finding out where they live, how they shop and how they interact with their families.

If thought about in a logical manner, it makes no sense that people do not continue their courses of treatment. Why would people not follow through on advice sought?

Devastating impact
The first thing discovered would be that the emotional impact of being diagnosed with diabetes is completely and utterly devastating. People feel terribly guilty about the diagnosis and there is self-blame and shame about what they feel they have brought on themselves.

Indeed, there is a whole industry set up to support people at this point in their lives. If the company knows this about people with diabetes, and wants to learn more about them, it would ask its questions in a different manner, rather than how it would if it saw them just as diabetic patients.

The second thing to be found out would be that many of these people know the 'right answers' to managing their diabetes, but fail to act on them in a meaningful way. This is not through any form of malice or wilfulness, but through a lack of understanding. This can only be found out by being in their environment.

For instance, rather than conduct a traditional market research interview, we spent some time with a person with diabetes to understand his world. This person told us (and his doctor) that he could not understand why he was not losing weight, as he was exercising every day, taking the dog for a walk in the park. We went with him on one of these outings. It turned out that he was using an electric chair to walk the dog, but it was perfectly justified in his mind that this was exercise both for him and the dog. We would not have known this if we had not seen the world through his eyes.

So how does this impact patient adherence? This is one of the major issues faced by the industry at the moment. If thought about in a logical manner, it makes no sense that people do not continue their courses of treatment. Why would people voluntarily book themselves an appointment for advice or treatment by a physician and then not follow through on the advice they sought? If people are thought of not as patients, but as human beings, then it is less of a conundrum. People can comfortably hold contradictory views and exhibit contradictory behaviours without any sense of conflict. How many of us claim we are environmentally aware but think nothing of taking long haul holidays?

Different behaviours
This behaviour follows the same pattern as adherence. Patients, particularly on long-term medication, exhibit different mal-adherence behaviours, for instance. Some want to feel they are in control, and change their medication accordingly, while others simply forget and dose to catch up, or miss a dose. This is the reality of the patient as a person and the behaviour he or she will exhibit.

Understanding the emotions and behaviour patterns which lead to mal-adherence is critical to developing an effective support programme for these people. To make a difference in the area of adherence, which groups of people exhibit which emotions must be identified and focus must then be on those who are the easiest to influence. There will never be a situation where all patients are adherent at all times, so the focus has to be on reaching those whose behaviour could change to have a positive impact on their overall quality of life.

So what's in a name? A name creates preconceptions about a person, what he or she is like and how he or she behaves. When we start with a patient cohort, we already have preconceptions about how that group will act and behave. It is interesting that the French government is currently running a campaign, which leads with the line 'I am a person, not a cancer'.

The best way to understand a person is to see him or her as a whole. To be with him or her in his or her own environment, interact with the things and the people he or she interacts with and observe what happens, when it happens. With critical observation, the obvious suddenly becomes less clear and the contradictions in people's lives more acute.

With this deeper understanding, we can communicate better with people and we can focus on those who are in a position to make a positive change. In addition, we can understand the most effective and impactful language to use. You cannot tell someone who already thinks he or she has a healthy lifestyle to eat healthily; the message is lost in the denial.

As soon as you think of a person as a patient, you change the way you approach that subject. If you consider him or her as a person and the condition one facet of that being, then very different paths and opportunities open up.

Sarah PhillipsThe Author
Sarah Phillips is Head of Health at Ipsos. She works closely with pharmaceutical companies in designing and interpreting market research to support their strategies and brand development. She is widely published in the pharmaceutical press and a board member of Ephmra.

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3rd August 2011


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