Stony Brook, NY — What if changing just one thing would improve communication between doctors and patients, help lawmakers make better decisions, and even improve funding for science? Would we do it?
Alan Alda and Sally Okun are advocates for that one simple change: teaching healthcare to speak in the language of patients.
If you’ve ever been the one in the paper-thin gown listening to a doctor whir through a cacophony of acronyms and complex medical terms, you know the problem. But, it’s even bigger than that moment. I recently got an early sneak peek at an article Tyler Durbin is writing for the next edition of UP:ROOT. In it, he says two things that might shock you:
- Only 12% of U.S. adults have proficient health literacy (U.S. Department of Health and Human Services)
- The average reading level of the 30 million Americans who will be entering the heath care system is 5th grade while most healthcare information and education is presented at a 10th grade reading level (“Are Adequate Steps Being Taken to Address Health Literacy in this Country?” Managed Care Outlook, 23(11), June 1, 2010.)
It’s not just that we don’t share a common colloquial or a way of describing things, it’s that language can be an actual barrier, one that prevents understanding.
Poor communication and poor health literacy were first linked to poor health a decade ago. People who find their doctor’s advice confusing don’t manage their chronic diseases as well and are more likely to wind up hospitalized or, among the elderly, even die prematurely. Better communication can change that. Meet the new advocates fighting for simpler conversations:
The World’s First Patient Lexicon
Sally Okun is a palliative care nurse by training. Early in her career, she was the one who sat at kitchen tables with her patients talking about health and what mattered most to them. When she took the stage at this year’s TEDMED, she had just one question for the assembled healthcare advocates and practitioners:
Does anyone in healthcare want to be understood?
“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.”
Every day, she said, people tell healthcare practitioners their stories. Those individual experiences get logged into clinical notes, captured as chief complaints, even written in quotes, but there’s no opportunity for shared learning because we have no way to collect and compare these shared stories.
That’s where her new job comes in. Okun is the Vice President for Advocacy, Policy and Patient Safety at PatientsLikeMe. There she’s heading up a first-of-its-kind effort to listen to, retain and quantify the experiences of real patients, through their posts on the site. This curation project maps human language to clinical language. It’s multi-dimensional, contextual and evolving.
Here’s an example of how they’re mapping clinical language to human language:
The medical term for trouble walking is “gait disturbance.” Looking across the entries of hundreds of patients, Okun and team found 36 different human expressions of that challenge, some that referred to it as a primary symptom and others as a side effect.
Behind the hundreds of patients represented in these images is meta data that includes everything from age to when they had their first symptoms.
The stakes are high, Okun said. 70 – 90% of the time a patient’s story will tell us the diagnosis, but that story is not captured for ongoing learning.
Center for Communicating Science
Do you know Alan Alda? Depending on who you are reading this, he’s either known to you as Hawkeye from M*A*S*H., Arthur Shaw in the Tower Heist, or the host of Scientific American Frontiers. That last one – Scientific American Frontiers – was a long-running collaboration between PBS and Scientific American magazine. About a decade ago, Alda was on a shoot in Chile for the show when he was stricken with sharp stomach pains. A local ambulance rushed him to a dimly lit hospital where he was told he needed to have life-saving surgery.
“Some of your intestine has gone bad, and we have to cut out the bad part and sew the two good ends together,” the physician explained.
Oh, Alda said, “You’re going to do an end-to-end anastomosis.” Turns out, it was the first operation he learned about as a field doctor on the show M*A*S*H. But he knew most people sitting in that same exam room – or watching his show in their living rooms – had no idea what that complex term meant. So, he set out to foster more simple conversations like the one that doctor had with him.
“They’re not going to ask the right questions if science doesn’t explain to them what’s going on in the most honest and objective way,” said Alda. “You can’t blame them for not knowing the jargon — it’s not their job.”
Alda is on nothing short of a one-man mission to teach physicians, physicists and scientists of all types to ditch the jargon and get their points across in clear, simple language. He’s the founder and visiting professor of journalism at the Stony Brook University Center for Communicating Science.
The core of his curriculum is improvisational role playing designed to help doctors and scientists explain complicated concepts incredibly simply. The school also sponsors the Flame Challenge, an annual event that asks students to submit their most perplexing questions and then challenges scientists to answer them in a way those children could understand and repeat. Last year’s question was What Is Time? The winners really did make in simple.
Posted by: Leigh Householder
Finds by: Kathryn Bernish-Fisher
Original illustration by: David Wink
