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Graduate student gives Parkinson’s patients a platform to tell their stories

Graduate student Johanna O'Day has started an effort that helps Parkinson's patients tell their story and connects researchers and patients.

Scientists working to treat debilitating diseases often are split into two categories: those who see patients, and those who don't.

But graduate student Johanna O'Day has the best of both worlds — and she's making it her mission to bridge the gap for others too.

By day, O'Day works in two labs at Stanford, one based in bioengineering and one in Parkinson's disease research. In tandem to her research, she and Gillian Kumagai, a Stanford librarian, launched something called The Parkinson's Story Exchange, a StoryCorps-esque platform that provides patients with an opportunity to tell their stories.

"The Parkinson's Story Exchange is a way to increase empathy between researchers and patients. I work with patients in clinical experiments every day, and I realized that there's a lot of researchers who don't actually have that experience, who don't actually get to meet the people that they're working to help," O'Day said. "So the whole goal was to start The Parkinson's Story Exchange and record conversations with people who have Parkinson's, and then post them on our website where researchers and the public can them listen to them in a podcast format."

The Parkinson's Story Exchange grew out of a fellowship O'Day participated in at Stanford's d.school that encouraged students to think about their research in a creative way. Influenced by her mother, who worked in a nursing home for many years and prioritized compassion, O'Day decided to start the story exchange.

O'Day emphasizes that each patient should feel free to share anything they like, Parkinson's related or not. So far, she's recorded 10 interviews with patients and for every story it works something like this: Either O'Day or an interview facilitator and the patient sit down in a quiet room, each with a microphone in hand, and they talk for 40 minutes. No scripts, no phones. Just a conversation.

"I always give the patients the choice to record with whoever they want, whether it's me, or a caregiver or someone else. They can bring anyone they want to the interview, and talk about literally anything," said O'Day. "I like that format because it lets you get to know the people with the disease, and not necessarily characterize them because of their disease."

O'Day says that interviewees might be a bit shy at first. "At age 73, when someone asks me what my story is about, it's sort of hard to know where enter the story," said a patient named Candace. But it doesn't take long for the hesitation to soften, and soon they're weaving anecdotes about their accomplishments into the larger story of their life.

A minute or so into Candace's interview, she begins recounting the excitement and challenges she faced as one of 30 women in a class of 800 at Harvard Business School.

"I'm not doing anything special, I'm just giving people a place to talk and share their story," said O'Day. And if a patient wants to participate, but doesn't want to share their story publicly, that's okay too. Everyone gets a hard copy of their recording and can choose to do with it as they please. One man who chose not to share his story publicly wanted to make a recording for someone close to him.

"We were able to help facilitate that, and he was able to give them the interview," said O'Day. "That was actually one of the most powerful recordings — it was very emotional and for this person it felt like the interview was fulfilling a goal that he had."

There's something really powerful about having 40 minutes to talk with someone who is often essentially a stranger, O'Day said. "It's a conversation that can go in any direction, and I think the simplicity of that model is what makes it so powerful."

O'Day continues to expand the project and welcomes all comers who wish to contact her about participation.

Photo by neil godding

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