Fieldwork Part 2: Hemophilia

Coming out of the field, two themes emerged again and again from our research: the idea of rite of passage and the importance of control.

Rites of passage in adulthood serve as a symbolic transition into a new state of being, with certain responsibilities, actions, benefits, and social roles. In the case of non-compliant sufferers of hemophilia, that transition was almost always lacking. There is no ritual of separation as parents continue to call several times a day. There is no statement by either the person with the disease or the people who care for them acknowledging that they are now responsible for their own life – not just figuratively, but literally. And so, our participants created it for themselves.

This process was entirely personal, and these young men found themselves in an extended transitional state, searching for a sort of resolution. Until that resolution was found, the medication became a target for asserting a sense of growing personal control. The medication and the needle became the symbol on which to hang a new sense of control and identity.

Control over the physical, psychological, and cultural state that had dominated every element of their lives was central to our participants’ move to a new identity. There is no cure for hemophilia, but, in gaining control over their identity and establishing themselves as something “beyond the disease”, they are reborn as someone “with hemophilia” rather than a ”hemophiliac”. They become a fully realized person, rather than being an extension of the disease.

Having finally identified our two major conceptual themes, we developed a new campaign centered on the passage into adulthood. Working with our creative team, we changed the conversation from one of vague rebellion to one of control. Taking control of your regimen is a symbolic rebirth. Taking control of infusion means leaving your past behind, not just following the same old pattern. The focus was on defining your future through medication and redefining being a “hemophiliac”. Treatment would be synonymous with stripping the disease of its power and ushering in a whole new world of possibilities defined by the person with the condition.

We also knew that a traditional campaign wouldn’t have legs if it didn’t have a digital extension, so we developed an entirely new web presence: a new, secure website focused on the aspects of transition to living away from home. We developed a private community with a focus on tips, not support. The term support conjured images of the meddling they were trying to escape. “Tips” conveyed shared knowledge and the sense of fostering a community from a group with similar experiences others can’t quite grasp. The community is closed to anyone who doesn’t have the condition or who hasn’t been invited into the conversation by someone with hemophilia. Control is exclusive to people with hemophilia, they have the power to limit or extend their world as they see fit.

At a more concrete level, users gain control over payment, appointments, and doctors. They gradually transition into managing their own care over time, with a series of guideposts, acknowledgements and reminders.  This led to developing a model that allowed content to be restructured to reflect where users were on the transitional/post-transitional continuum. Content could be assigned based on how long they had been out of their parent’s home, whether or not they were living alone, and whether or not they were working regularly with a medical team to address the disease. All of this provided tools to manage the transition to independence.

This website also provided these young men with an outlet for sharing their experiences and stories, moving them from a sense of isolation – it’s decidedly uncommon to find someone else with hemophilia in your circle of friends and acquaintances – to one of community. The upside of this was increased support, a sense of belonging, shared advice, and more sustained, expansive interaction. Not only did it help increase compliance, it also helped broaden the conversation to other young men with hemophilia who were using another medication to regulate the disease. Jacob, a 19-year-old electrician expressed it by saying, “There aren’t that many of us, so when we’re talking with each other it’s believable, it’s real. It keeps you honest.”  In other words, it built awareness of and consideration for our client’s medication. And it helped these young men feel like they were more than their disease.

The pharmaceutical industry is extremely conservative and generally fixated on data. While the industry does hire people to do more exploratory work, numbers rule the marketing landscape. For this reason, and the fact that this was the first time they had ever funded this type of research, we chose to set the stage by telling a story.

The response? In addition to giving the green light to all of our proposals, the client asked that we share the work throughout the company as a demonstration of the power of qualitative research.

In the end, getting our heads out of the data, rethinking the questions, and getting into the lives of these young men made all the difference to the brand, and, I’d like to think, the people coping with the disease day to day.

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Published by gavinjohnston67

Take an ex-chef who’s now a full-fledge anthropologist and set him free to conduct qualitative research, ethnography, brand positioning, strategy and sociolinguistics studies and you have Gavin. He is committed to understand design and business problems by looking at them through an anthropological lens. He believes deeply in turning research findings into actionable results that provide solid business strategies and design ideas. It's not an insight until you do something with it. With over 18 years of experience in strategy, research, and communications, he has done research worldwide for a diverse set of clients within retail, legal, banking, automotive, telecommunications, health care and consumer products industries.

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