That’s what some people will still tell you in the healthcare industry in America. “Patients can’t tell you anything important”. Too many times, we encounter people who think the patient perspective can be obtained through someone else. "Doctors tell the patient story well," they'll say. Or, "We already know what patients need". My favorite is this one: "The patient perspective doesn't really matter here because they don't have any say in product choice or usage." It's always left me silent when I hear this from folks in marketing, or physicians or executives. Do you care what the patient feels? How they perceive their illness, their body, in this context? In these cases, it seems like everyone knows what the patient wants, except the patient. Countless people have brought patient perspectives to the forefront in the past fifteen years, so it's surprising to encounter this underlying bias.
In the research work that I do, the patient voice and the patient's imagination are the most important focus for me. I know a lot of people agree, but I find that sometimes even the best intentioned people only go halfway in their efforts to let the patient represent their own point of view. Recently I came across an article in the Huffington Post about people who suffer from migraines. Several of them provided a brief metaphoric description of how they experience their symptoms (e.g., “It leaves my brain feeling like a wrung out washrag.” Or, “It feels like I’m pushing my head against a pallet of bricks.”). My reaction was really positive - here's a national media outlet giving voice to sufferers of a neurological disorder.
Along with the narrative descriptions, pictures illustrate these same symptoms (e.g., a face in agony with a washcloth being twisted over it). Something was off with the pictures - they all looked similar and they were way too polished. In fact, a HuffPost artist had created the pictures, rather than the patients themselves. “What a shame,” I thought. "There would be so much rich insight offered by getting them to draw their own self-portraits."
At BuzzBack, we often ask patients to create pictures or collages about some experience they’ve had, or in response to an idea we present (an ad, a package, a description of a drug, etc.). Then we ask them to tell a story about their picture. We’ll do this across as many people as seems reasonable. Sometimes it’s 1,000 patients, and sometimes a lot fewer. For sufferers of rare diseases, we’ll do it with the ones we can gather – maybe 25 or 30. We do it in the US, and in many other countries too.
At one point we started asking doctors and other healthcare professionals to engage in this free form, creative work based in imagery. Surprisingly, the professionals do it willingly and energetically, and we now do just as much work with them as with patients. Talk about a group that needs a creative outlet to vent their issues: doctors must be the most frustrated profession in America. In a 2014 survey of physicians, 81% said they were over-extended, and 29% would choose a different career if they could go back. Within this framework, they love to create pictures and tell us stories, too.
Sometimes, we’ll ask doctors to depict a patient with “disease X”. At the same time, we’ll ask patients with the condition to describe their doctor, or themselves, or some other aspect of the disease and its treatment. Then we tie the two perspectives – two sets of images and stories – together. What do they have in common? Where are there discrepancies?
As one might imagine, we get a rich visual collection tied in with a strong narrative assemblage. It’s the patient story and the doctor story together. For clients, it’s crucial for coming to a better understanding of the disease their drug treats. We find unmet needs, the extent of the struggle, the concerns and issues that doctors and patients both have. It all comes from personal experience, and personal perspective. It’s unfiltered and extremely rich. And we don’t draw the pictures for the patients, we let them do it themselves.
To find out more about how we do what we do, download our Patient Journey white paper now.
