“Beyond research motivation, I want to give a voice to the disease to help researchers empathize and further understand who all their hard work is going toward.”
These are words from Johanna O’day posted on the website she created to help bridge the gap between researchers and the Parkinson’s Disease patients they’re serving.
Johanna is a PhD candidate at Stanford University in bioengineering. She’s seen firsthand how working with real patients can impact the research that goes on in the clinic. As someone who both interacts with patients and completes research without them present, she says her motivation is fueled by the time she spends with people living with the condition.
However, not all researchers have the experience that she’s able to have. Some researchers spend all of their lives in a lab and never meet a single patient with the condition they’re researching. Realizing this, Johanna began work to develop a platform where Parkinson’s patients could share their stories, and researchers could listen. Not only does this help encourage empathy in the researcher, it allows patients the opportunity to be more involved in the research process, something that is very easy for them to feel excluded from.
The project is called the Parkinson’s Story Exchange.
The Parkinson’s Story Exchange
The Parkinson’s Story Exchange has a simple premise– allow patients to share anything that’s on their mind (related to their disease or not) and then share these stories with the researchers who are working to find a cure. In this way Johanna hopes that researchers will get to know the patients as individuals, and not just as their disease.
Patients and interviewers (either Johanna herself or a friend/caregiver of the patient) enter a room and talk about anything the patient likes for 40 minutes. There are no scripts involved, just two microphones and the human experience. The interviews are then published online.
The website is set up in a podcast format and anyone can listen to the patient stories. Patients who participate in the project always have the choice of whether or not it is published. Johanna tells the story of one man who went through with the recording but changed his mind about the interview being posted on the website after it was done. Instead, he asked if he could get his own copy of the interview to share with someone close to him. Gifting his interview seemed to fulfill a goal he had and it is one of Johanna’s favorite stories.
Johanna says the project was inspired by her mother who worked in a nursing home and always “prioritized compassion.” Ultimately, the goal is to humanize the research project and improve outcomes for patients.
If you’d like to participate in this program, or know someone who may want to get involved, you can contact Johanna here.
You can read more about Johanna’s research and the impact its had here.