Washington, D.C. — If you work in healthcare, you’ve probably had your fair share of conversations so mired in TLAs (three letter acronyms) and exclusionary insider lingo (did you know that “idiopathic” is really just a very fancy way of way of saying I don’t know) that even you’ve lost track of what exactly people were talking about.
Sally Okun, Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe, tackled that very topic at TEDMED in a talk called “Does anyone in healthcare want to be understood?”
Okun said, “The language of health falls woefully short because we silence the words and stories of those at the center of healthcare: Patients. The language of health is medicalized, professionalized and overly specialized. We are so dependent on acronyms and jargon that remaining fluent in this language is almost impossible. Even for those of us who know the language.”
We’ve built our own language, deep in clinical nuance and scientific specificity, but we routinely forget to translate it for non-native speakers. Worse, we don’t embrace the words and lexicon people use when talking back to us. “We have no lack of standardized clinical vocabularies for clinical terms,” she said, “but we have no vocabulary of the words that are used by patients to describe their illness, their experiences and what it means to them every day. We need to change that. Let’s humanize the language of health with the language and lexicon of patients.”
Her talk reminded of us of a great story / experience from Memorial Sloan Ketterin Cancer Center.
Ellen Sonet is the VP of Marketing at MSKCC and she’s passionate about using customer insights to drive better marketing and experiences. In the hospital world, that’s harder than you might think. There, marketers don’t have a lot of power. Instead, doctors pretty much run the show. They talk to patients. They know best. In all of Memorial Sloan Kettering’s 9,000 employees, only 3.5 work in marketing.
Still, Sonet knew that to make her team effective, she had to challenge assumptions about what the hospital thought it knew about how patients make decisions about care. She partnered with the National Comprehensive Cancer Network, a group of twenty-one dedicated cancer centers around the country, to recruit and actively listen to the experiences of over three hundred people recently diagnosed with cancer in a private Communispace community.
The first question they asked was: How did you decide where to get treated?The doctors believed patients made that choice based on reputation. They wanted a world-renowned cancer center that would increase their chances of positive outcomes. But, what the patients said was very different.
At that moment of diagnosis, they weren’t thinking like business executives – comparing choices and making assessments. They were shocked and thinking a million things at once. Tracy D, a member of the panel said, “As I’m sure you know, when you hear a diagnosis of cancer, you go into a tailspin. You are coping with so many fears and emotions, yet you want to know as much as you can. The web has been invaluable for that, but I really appreciated [my doctor] taking charge and telling me where he thought I should go. There was really no discussion about it. I was incapable of discussion at that time.”
More than half the patients said their primary care physician was important in the recommendation of where to get treatment. In the stressful days after diagnosis, they appreciated the familiar, comforting role of that trusted advisor.
That simple insight changed how MSKCC went to market – shifting critical marketing dollars from reputation-building consumer media to better relationships with community doctors.
Sonet’s interaction with the panel didn’t end there. She continued to use it to improve marketing, going deep into how people use the internet to plan their treatment. The panel shared their go-to resources and talked about what was missing. They shared their specific searches – which, of course, included terms like “breast cancer,” but also an array of deeply medical terms, like “metastatic.” Speaking and translating around that pro-am language of patients became a central strategy in developing their new website (and search-worthy content)
Posted by: Leigh Householder