It’s a paradox that rare diseases are not so rare; one in ten people has a rare disease. Yet each rare disease, and each person’s experience with a rare disease, is different. This makes for complex communication with family and health professionals. Hear how Dr. Paul Ranelli uses the arts to delve into the complexities around communication and rare diseases.
Transcript lightly edited
One in ten people has a rare disease. My guest on today’s show, Dr. Paul Ranelli, tells us how he helps patients, family members, health professionals and the general public understand more about the varied and often hidden experiences of having a rare disease.
Hi everybody. I’m Dr. Anne Marie Liebel and this is “10 Minutes to Better Patient Communication” from Health Communication Partners. Our expertise is in teaching people and organizations how to get better at communication. Our new course Foundations of Equitable Interpersonal Communication in Health teaches all patient-facing employees to identify and manage those cultural mismatches that can show up in communication. From Cafeteria to Cardiology! Learn more at healthcommunicationpartners.com.
Anne Marie: I’m here via zoom with friend of the show, and Professor Emeritus of Social Pharmacy at University of Minnesota College of Pharmacy Duluth, Dr. Paul Ranelli. Doctor Ranelli, welcome back to the show.
Paul Ranelli: Good to see you and good to hear you Anne Marie!
AM: I’m so glad, it’s so good to have you back on the show.
PR: Thank you.
AM: You’ve got an exciting story to tell us that I’m looking forward to so we’ll go ahead and jump right in. What is the issue that you are facing now that’s related to Patient communication?
PR: Well let me tell you that it’s exciting for me. I’m excited about it. Over the last 10 years of my career, I have been trying to put together different Arts forms–Performing Arts, Visual Arts–as a way to present and discuss medication use experiences of patients from the eyes of the medication user.
AM: So it sounds like there’s a few different kind of issues or problems that you’re trying to address through the Arts. You have the unknown, the hidden parts of medication use experience. We also know there can be incomplete understandings of the medication experience on the part of the patient, on the part of the clinician.
PR: Right. Right. Communication–I mean we say it now, all facets of life, everything gets boiled down to communication. But here in medicine and health it is communication. I mean it is what we, how does the—I’ll pick on us as pharmacists– how does the pharmacist communicate with their patient about this medication that they’re taking? So I want to expose those details that a person is grappling with that they may not tell or may not talk about. And in an arts way or in a performance way, with Performing Arts, you can tell those deeper stories and get that human interest. And see how complicated a system or situation may actually be for the person taking that medication–that we would never see. That we would never think about.
AM: And you’ve been doing this lately. You had a project that you’ve been working on for the past year that is about this. Can you tell us about that project?
PR: Oh sure. So my most recent project that has just come to a conclusion is called RARE. And it has to do with rare diseases and rare and orphan drugs. Those are two phrases that are prominent in this project: “rare diseases” and “orphan drugs” have legal and federal designations about what they are. But basically what it is, is there’s rare diseases that not a lot of people have, but there are a lot of rare diseases. So, not many people have one rare disease, but there are a lot of rare diseases that occur that don’t have the masses [of people] that have them.
And so in the pharmaceutical world and in the medical world, how can we treat these? So there’s research and movement in the area called orphan drugs or orphan treatments, and that’s the term that’s used for the smaller groups of people that need some sort of treatment or help with this disease, if we can find one.
AM: So why focus on rare disease? Why did rare disease capture your attention?
PR: Ah, Good question. It captured my attention because I’m working with colleagues at the College of Pharmacy in the rare disease area and are studying rare diseases. And the stories that I was hearing from them about the patients and what they were experiencing with rare disease, and the isolation that they were feeling, and the way they didn’t feel heard at times because they weren’t part of the masses, and they weren’t in the mainstream. There’s 7000 rare diseases that are recognized, I think, in this country, maybe around the world. Maybe it’s more. 1 in 10 people have a rare disease. There are a lot of them, but not so many people have a particular one. So these stories were just so powerful and so passionate that these people are experiencing. So turning these stories into a play was how RARE got started.
AM: Wow so you’ve got these stories from actual patients and family members and you turned them into a play. Now you involved some theater students, I think, at the University with this?
PR: Yes, thank you for helping remind me. So we had a few phases of this. One of the groups that I work with at the College of Pharmacy is the Center for Rare Diseases and Drugs. So they came on board and said “yes we’re interested in this.” And then the Theater Department at the University of Minnesota Twin Cities were interested in this. So I helped get those two parties together and they got together to form a class for theater students. Sort of like Phase 1 of this project.
AM: I mean that’s super exciting for collaborative learning there on the students’ behalf, and the people in the Center for Rare Disease. And then you went ahead and involved a professional playwright.
PR: Yes. So as we got finished with phase one, phase two was the theater professors–one of them directs a local theater company. And he commissioned a playwright, Kevin Kling, to take those students’ stories, take those stories from phase one that students put together. And then add his own stories to it, and talk to patients and families, and his own personal experiences. And [Kling] developed a play which was phase two of this play called RARE that Sod House Theater–which is a professional theater company–took on the road. So in October ’22, the Sod House Theater presented RARE eight times in different venues throughout Minnesota, Wisconsin, and North Dakota.
AM: Seems like it’s as much for the health professionals in the audience, as it is for the people who have rare disease, and their families, and the general public. I mean everybody’s walking away with something.
AM: Because of the careful way that you’ve designed this. So what what’s one of the things that you learned, Paul Ranelli, from approaching this complex set of issues through arts-based pedagogy?
PR: Well one of the things I learned is that I need experts to help me in the Arts! That’s one thing I learned. Which is a great reason for having collaborations. This is a, what’s the term, poster child for collaboration! And needing people that are experts. You know something, but they know something. So bringing people together and collaborating is very much important as well.
AM: And you’ve been on this show before and talked about how patients are experts as well. I love that and I just wanted to throw that in there.
AM: What else have you learned?
PR: Well and I learned that there’s–in training of art students, I mean I’m an academic and I spent about 40 years and training Pharmacy students, is helping them see the big picture. Which means the macro picture. But looking at the micro picture, you can’t ignore it. And so a phrase that was used in the play, and I know it’s been used in medical education, is the idea of “looking for horses or zebras.” And then that analogy means: horses, there are more of them. And you kind of know what a horse may be. And there’s many more of them. So think of those as a regular disease if you will. Whereas zebras are rarer, they are different. They look like a horse, but they have some stripes, and genetically they may not be the same. So maybe that patient you’re looking at is more of a zebra than they are a horse.
AM: Dr. Paul Ranelli thank you so much for coming back to the show, it’s a delight talking with you as always!
PR: Same here! You’re welcome. And have a great day everybody.
Thanks again to Dr. Paul Ranelli. I’ve put links in the show notes so you can learn more about RARE and about Dr. Ranelli’s other arts-based explorations of medication-taking experiences. Transcripts for this and all episodes are at healthcommunicationpartners.com. This has been 10 Minutes to Better Patient Communication. Audio engineering by Joe Liebel. Music by Joe Liebel and Alexis R.
Go Ask Alice
Video (2m) link: https://vimeo.com/228156335
AJPE publication: https://www.ajpe.org/content/84/4/7606
To Really See
Video (14m) link: https://vimeo.com/234772831
Video documentary (25m): https://www.youtube.com/watch?V=uavdwkt7alk
Duluth (MN) News Tribune Story: https://www.duluthnewstribune.com/news/duluth-pharmacy-professor-helps-u-of-m-students-explore-medicine-through-theater
National pharmacy education story: Https://www.aacp.org/article/rare-event