How would you answer if you were asked, “who is advancing the science of Parkinson’s disease (PD)?” You might begin by talking about the scientists who are doing the difficult work of seeking new treatments and a cure. But what about the people who live with PD and their care partners? After all, these individuals are in their own way experts who understand what it is really like to live with Parkinson’s day in and day out.
PDF believes that when these two kinds of experts work together — the scientists who study PD and the people who live with it — they become a research “dream team” that can more quickly solve, treat and end PD. This seems to be the case for one team that includes researchers Patricia Ede, R.N., and Martha Nance, M.D., of Struthers Parkinson’s Center in Minneapolis, MN, and Kim Erickson and Libbe Erickson, R.N., PDF Research Advocates from Stillwater, MN (Kim lives with PD).
Last year, PDF awarded the team a Parkinson’s Advocates in Research (PAIR) Leadership Award to conduct a small clinical study entitled Participant Retention in Parkinson’s and Huntington’s Clinical Studies. Using a grant of $5,000, they pondered a central question in PD science: why don’t more people volunteer for PD trials, when the lack of participants delays studies and in turn, the development of treatments? Instead of simply asking, “why can’t we attract more people?” they asked, “what motivates the people who do participate?” What can we learn about them that may help us encourage more people to participate, thus speeding research?
To find the answer, Pat developed a survey with the help of Catherine Wielinski, M.P.H., Research Director at Struthers, and Kim and Libbe used their insights to modify it, making it easy to read and complete. They sent it to 65 people who had completed studies at Struthers.
“The overall goal was to find out which factors would make people enroll, stay in or drop out of PD studies. The factors we looked at included demographics (gender, age, ethnicity); distances that people had to travel; their motivations; and which parts of study participation they found rewarding or difficult,” said Kim.
Kim and Libbe’s input paid off — a remarkable 80 percent of people returned their surveys. So, why did people stay in studies? Was it for access to medical care or researchers, or for any kind of compensation?
“The results were surprising,” says Libbe. “When we asked people what kept them in studies, overwhelmingly, they said it was because they felt they were giving back.”
The team admits that its study is small and has limitations. For instance, the people who did not participate weren’t surveyed. Might it have been that their decision had to do with economic hardship or inability to find transportation?
Still, the results were eye opening. “We expect that the responses will provide researchers, funders and participants with potential insights into study design and incentives to help participants stay in PD studies,” says Pat. “In fact, the results helped our team at Struthers to recognize the impact of simply saying ‘thank you’ to participants at each visit. It can make a difference.”
Not only did the dream team provide insight into PD trials, they learned from each other’s expertise.
“Kim and Libbe are an integral part of our team. We depend on their insight in our research endeavors,” noted Pat. Kim added, “By working closely with researchers, we have learned how dedicated they are to finding a cure and treatments for PD. Their commitment to helping people with PD is truly astounding.”
Experts with the same goal — a dream team after all.
About PAIR Leadership Awards
- Support projects conducted by teams of researchers and patient advocates that have the potential to accelerate PD research.
- In 2014, PDF supported four PAIR Leadership Awards with $20,000. They supported researcher-patient teams studying clinical trial retention (profiled here), telemedicine, the benefits of singing for PD, and strategies for building PD researcher-patient collaborations.
- Application period is rolling.
PDF believes that bringing together the two kinds of experts in Parkinson’s — those who study it and those who live with it — will help us to more quickly solve, treat and end Parkinson’s disease.