If you’ve read my online bio, or follow my activity around the net, chances are good that you know how passionate I am about the issue of health literacy. This piece marks the start of a new series I’ve been invited to write on Pulse + Signal, called Bridging the Communication & Health Divide. The focus (you’ve guessed it!) is on health literacy and those working to help us ‘obtain, process, and understand basic health information and services needed to make appropriate health decisions (Healthy People Definition)’.
First in the series is an interview with my former classmate and colleague, Jonathan Emerson Kohler, MD, MA. Like me, even before pursuing a Master’s degree in Health Communication, Jonathan recognized the importance of one’s health literacy and combined his many interests and talents to form RxCreative, a company creating ‘medical narratives and narrative medicine.’ Jonathan and his team are a diverse set of physicians, scientists and entertainment industry types working to craft accurate portrayals of medicine and science while engaging the audience, whether in ‘Hollywood or the hospital.’
I asked Jonathan a few questions about RxCreative and their work toward improved health literacy…
BC: How did Rx Creative come to be?
JEK: For as long as I can remember, I’ve been interested in merging my interests in theater and science. I really see them as being synergistic: both, at their best, are about understanding what it means to be alive — whether at the molecular level or as part of a family or a society. In college I majored in biology with essentially a minor in theater, and I was always struck by the stories of science, and the force of narrative as a way of teaching and learning it. If you look at science as a series of facts and figures to be memorized, it seems really hard and really boring. But if you understand the story, the plot, the characters, then it’s incredibly interesting and dramatic and, honestly, easy.
Once I got to med school I started looking for ways to use theater to teach people about medicine — both patients and doctors. That started with a group of friends and I doing a play about death and dying, as a tool to teach medical students about empathy and the dying process. We ended up touring that show around the country, on and off, for a year. The response we got was got was just tremendous. It was clear that using stories to teach people about something, rather than just doing another PowerPoint lecture or showing a boring, emotionless video, was allowing us to teach something unique. Plus, it was really, really fun.
At the same time, I was watching the rise of the current crop of medical dramas on television, and I was pretty alarmed at the way that medicine was portrayed, and at the way that what people saw on television was shaping their expectations of what would happen to them in the hospital. On the one hand, I was really depressed by the facile inaccuracies that were finding their way onto the air, and on the other hand, I kept finding myself thinking that if these shows really understood medicine, they could do much more exciting stories with accurate medicine than they were doing making stuff up. Modern medicine really is stranger than fiction. You don’t need to misinform people to entertain them.
So that’s when I came up with the idea for RxCreative…a company that would use doctors and scientists who were also great storytellers to bridge what I still think is a false divide between science and story. We would help people in the medical and scientific communities to use stories to teach their peers and their patients in a compelling, engaging, entertaining way. At the same time we would also help television and film producers access the real stories of medicine and use them to provide a public service while at the same time creating even more compelling stories. And it’s worked out better than I ever imagined that it would, on both fronts. We’ve got an amazing group of consultants, and we come together to brainstorm ideas for everything from major television dramas that are seen by millions of people, to patient education videos for parents of kids with rare conditions, to written summaries of the latest in battery physics. I’m just constantly amazed by the ideas our hive-mind comes up with, and the response from clients on both sides has been great.
BC: I don’t see direct mention of the term “health literacy” on your site but it is clearly a focus of your work. How do you approach the issue when creating patient-facing communications?
JEK: The work we do is firmly based in understanding, writing for, and improving health literacy. But we think about health literacy less as a standalone element and more as an essential part of our primary focus, which is story. Obviously, you can’t appreciate a story if you can’t understand it. So as we think about ways to make our stories accessible, we always come back to the question of how to tell the story so that our target audience will understand and appreciate it. One of the things that has been invaluable for that is the Masters degree in Health Communication that I got from Emerson College in Boston. That’s where I first really understood how poor health literacy is in our society — how most people understand language at the fifth-grade level, and how you have to be constantly vigilant about forgetting that the language you speak every day at work in the hospital is, for all intents and purposes, a completely foreign tongue to most of the people we’re talking to and talking about. Medicalese is more like Mandarin than English.
We do the standard things to make sure our health literacy level is right, when we’re writing our own projects: we write to a fourth or fifth grade literacy level, and we focus group and have expert review by members of our target audience. But one of the tricks that I’ve found to be most effective in making sure that the language in our patient education projects is aimed at the right level is by putting the target audience into the project. If we’re making a video about ostomy care for babies, then we get parents whose babies have ostomies to talk about their experiences in their own words, guiding their responses with questions that will make sure we cover the areas we need to cover. What’s hard is getting doctors to speak plain English…it’s hard to talk at the level of an elementary school student but not feel like you’re talking down to patients, and it can be a fine line. So we try to be a bit more scripted with medical professionals, while at the same time trying to keep things extemporaneous, and always, always focusing on the story that they’re telling.
BC: How do health literacy concerns play a role in your consultation with the entertainment industry, if at all?
JEK: If there is one overarching theme to our work, it’s that we want to help shape accurate expectations about science and medical care. And unquestionably the most powerful way to do that is with mass media like television and film. The process of television production is actually a great crucible for making sure that our messages are understandable. You’re working with a writer, who in turn has to explain his script to a producer and a director, who have to explain it to the actors, who have to explain it to the audience. So if you start going over people’s heads, you find out about it quickly and there’s a whole team of people who make sure that it gets fixed. But what you lose in that process, obviously, is fidelity of your story. You try to create a story about a headache, and by the time you see the final script someone is getting a brain transplant. Which is when you have to explain why the headache is actually really interesting…you’ve got an atypical migraine, and your character can have crazy hallucinations, and wouldn’t that be cooler in a way than remaking Frankenstein? That’s overstating things a bit, of course. I’ve actually been really impressed with the teams that I’ve worked with. They have all been really interested in — usually fascinated by — the medicine, and committed to the accuracy of their projects. But it’s alien territory for them. So we try to be very accessible and involved and constantly willing to go back to the drawing board to revise the medicine to do what the writers want it to do. We need to be a resource to them, and to be understanding about the needs of their story while at the same time advocating for the accuracy medicine and the science. It’s not our show, our job is to make the medicine work for them. So again, it’s story first, and our job is find the medicine that fits the story they want to tell. And the great thing about the stories of medicine and science is that, so far at least, we’ve always been able to go back to them and say, “I see what you’re trying to do with this brain transplant thing, but did you know that in the 1950’s scientists in Russia did head transplants on dogs? And it worked?” Because that’s more interesting, more amazing, more visually compelling, and yet completely true. In the end, they can tell whatever story they want…being right about the medicine won’t improve their ratings. So you have to add value by showing them how accurate medicine can actually make their stories better.
Many thanks to Jonathan for his time and insights! Feel free to leave questions or comments below, or tweet at Jonathan (@jekohler).
– Bridgette (a.k.a. @bcollado)