The pharma industry must look beyond the label of patient and see the person behind the disease.
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 - your football team mates might say you were competitive and sociable, your office colleagues might say you were good in a crisis, your fellow parents at your child's school might say you were liberal and generous. So who is the real you?
The answer is clearly that different stimuli leads you to act slightly differently, and each of those groups of friends only see one 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, let's say diabetes, that person then becomes part of the patient cohort of diabetics. But this is only one aspect of their life. It may be the case that it is a very important aspect, and it may impact other elements of their lives, for instance their lifestyle and eating habits, but labelling someone as a diabetic only gives you part of the picture. No-one would ever claim they understood a person just by looking at their eating habits, so how can you understand a person just by looking at their condition?
I would like the pharmaceutical industry to stop thinking in terms of patients, and consider people instead. People don't think in a linear or often logical fashion. It's OK for people to consider they have healthy lifestyles when the contents of their fridge tell a different story. It's OK for people to be influenced by multiple sources, their friends, family, celebrities, royalty or the media. And it's OK for people to feel different emotions on different days or even on different hours, right now I am in a positive mood, but something may happen to change this. This is different to how diseases are considered, they are looked at logically and consistently, they rarely follow a contradictory, random path, unlike people.
So how does this change the way we consider people who also happen to be patients?
We can learn a lot from looking at how FMCG companies (fast moving consumer goods) get an understanding of consumers, or people. If you were, let's say, a chocolate company, worried about the explosion of Type 2 diabetes, and wanted to know if you had the right to function in the health and wellness space, where would you start? I would recommend you did a 360 view of the diabetes world and the environment diabetics find themselves in. This would include understanding it from a physician perspective, talking to psychologists, academics and even diabetic chefs. You should also look at where diabetic people go to or are, this could be nursing homes, gyms and health food stores. You would focus on understanding the person in their environment, where they live, how they shop and how they interact with their families.
The first thing you would find is that the emotional impact of being diagnosed with diabetes is devastating, completely and utterly devastating. People feel terribly guilty about the diagnosis, 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 life. If you know this about people with diabetes, and want to learn more about them, you would ask your questions in a different manner, rather than if you just saw them as diabetic patients.
The second thing you would find is that many of these people know the 'right answers' to managing their diabetes, but fail to act on it in a meaningful way. This isn't through any form of malice or wilfulness, but through a lack of understanding. You can only find this 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 their world. This person told us (and their doctor) that they couldn't understand why they weren't losing weight, as they were exercising every day, taking their dog for a walk in the park. We went with them on one of these outings. It turned out that they were using an electric chair to walk the dog, but it was perfectly justified in their own mind that this was exercise both for themselves and their dog. We wouldn't have known this if we hadn't seen their world through their eyes.
So how does this impact patient adherence? This is one of the major issues faced by the pharmaceutical industry at the moment. If thought about in a logical manner, it makes no sense. Why does a person voluntarily book themselves an appointment for advice or treatment by a physician and then not follow through on the advice they freely sought? If you consider people not patients, but human beings, then it's 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 'Green' but think nothing of dreaming about long haul holiday destinations?
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 will dose up to catch up or miss a dose. This is the reality of the patient as a person and the behaviour they will exhibit. To understand 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, you need to identify which groups of people exhibit which emotions and focus on those who are the easiest to influence. We will never be in a situation where all patients are adherent all of the time, 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 gives us preconceptions about a person, what they are like and how they will behave. When we start with a patient cohort, we already have preconceptions about how that group will act and behave. I find it very 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 them as a whole. To be with them in their own environment, interact with the things and the people they interact with and observe what happens, when it happens. With critical observation, the obvious suddenly becomes less clear, the contradictions in people's lives more acute. With this deeper understanding, we can communicate better with people, we can focus on those who are in a position to make a positive change. And we can understand the most effective and impactful language to use. You can't tell someone who already thinks they have a healthy lifestyle to eat healthily; the message is lost in the denial.
It's my opinion that as soon as you think of a person as a patient, you change the way you approach that subject. If you consider them as a person and their condition one facet of their being, then very different paths and opportunities are opened up.