Parkinson’s Foundation Emphasizes Patient Role in Clinical Research

Hawken Miller avatar

by Hawken Miller |

Share this article:

Share article via email
Parkinson's Foundation patient advisory boards/ involvement research


The Parkinson’s Foundation is making an effort to put patients at the center of clinical research, both through its Research Advocates program and more recently, patient advisory boards, funded by the Patient-Centered Outcomes Research Institute (PCORI).

Since 2008, the foundation’s advocacy program has trained more than 300 Parkinson’s disease patients across 28 states on how to interact with scientists and the U.S. Food and Drug Administration, create study protocols, and evaluate research. Of those patients it trained, about 200 are considered active, putting in around three hours of work per month.

Karlin Schroeder, associate vice president of community engagement at the Parkinson’s Foundation. (Photo courtesy of Parkinson’s Foundation)

People can become new patient advisers in two ways when applications open in the fall, according to Karlin Schroeder, associate vice president of community engagement at the Parkinson’s Foundation.

One is to sign up for an online general education class designed in part by Pat Davies, a well-known Parkinson’s and research advocate herself, that will teach people the basics, such as the biology behind Parkinson’s disease, what a clinical study is, and how to read a journal article. The goal is to help patients understand the science they hear in the news.

For those who want more specialized training, the foundation will begin offering in-person Learning Institute educational seminars in spring 2022. To start, the program will target the African American community because they are underrepresented as Research Advocates.

“We want the community at large to be represented in research, whatever your race or ethnicity or wherever you live,” Schroeder said in a phone interview with Parkinson’s News Today.

The in-person courses will be offered to all patients, regardless of race, at a later date, she added.

A $246,174 grant from PCORI, awarded in 2019 and ending next March, allowed the foundation to invest in a new pilot program, which also seeks to involve a diverse group of people with Parkinson’s through patient advisory boards.

The Parkinson’s Foundation formed the first five groups at Emory University, in Georgia, Johns Hopkins University, in Maryland, Northwestern University, in Illinois, and at Oregon Health and Science University and Iowa University. Each of these locations is a Parkinson’s Foundation Center of Excellence — a medical center that has the most up-to-date Parkinson’s care specialization.

Recommended Reading
Parkinson's Foundation

Q&A With Parkinson’s Foundation CEO and President John L. Lehr

Schroeder said there’s a reason behind these choices. The first criteria, of course, was the centers’ willingness to hold these advisory boards, and the second, the demographic makeup of the surrounding area.

“We were trying to reach historically marginalized communities,” Schroeder said. “We wanted to be sure we were in communities where we might reach Black and African American populations or low-income populations.”

Dan Baker, diagnosed with Parkinson’s in 2002, has been a Research Advocate for 15 years, as has his wife and care partner, Pat. The couple also had been part of the Oregon Health and Science University’s patient advisory board for eight years before the collaboration with the Parkinson’s Foundation.

“One of the things that we enjoy is getting out, meeting people, and sharing our knowledge with them,” said Baker, 73, in a phone interview with Parkinson’s News Today. He and Pat also are involved with a group of newly diagnosed patients, supporting people at the beginning of their Parkinson’s journey.

Over three quarterly meetings, each of these new advisory boards is tasked with creating a patient-centered comparative effectiveness research study. The groups will have until December to decide on their investigation’s focus, and then have a year to execute it.

Such patient-centered comparative effectiveness research is under the umbrella of studies that are not directly tied to drug development. These types of investigations look at the clinical improvement of a person by changing one variable. One example would be comparing the outcomes of a patient discharged from the hospital with an assigned social worker with another who has a paper care plan.

The advisory board members all were trained in March and had their first meetings June 30. So, while they haven’t completely decided on their research topics, some ideas are forming. Several groups have expressed interest in exploring the effects of music therapy, while others want to learn more about retaining practical skills, such as driving.

Recommended Reading
singing, date night, music therapy, physical therapy, 2020, nonprofits, stem cells, sewing, fishing, wild card, pkg watch

Music Therapy Can Be Just What the Doctor Ordered

The hope is that these boards will develop long-term investigations with funds from the PCORI grant, as well as the Parkinson’s Foundation, which has pledged an additional $250,000 —$50,000 for each patient advisory board — for this effort.

“We’re hoping that this little seed money we’re providing from the foundation will allow them to then apply for bigger grants,” Schroeder said. “We’re really going to be here to help project manage and guide them as they work together.”

Next year, the Parkinson’s Foundation plans to add five more sites for the patient advisory board, eventually creating groups in all of its U.S. Centers of Excellence. The new push for patient involvement in research is a step in the right direction for Dan and Pat Baker.

“We’re excited to see all this participation because when Dan was diagnosed, we didn’t have all these facilities, exercises, and research available to us that we’re seeing now,” Pat Baker said.

The training program that led to these initiatives began in 2005, stemming from the idea that patients wouldn’t be as excited about studies if they weren’t involved in some way themselves, according to Schroeder.

“People weren’t engaging in studies, because it wasn’t something that was important to them, or the study was designed poorly, was very burdensome, and did not have endpoints that matter to the community,” she said.

Schroeder is hoping to change the narrative and branch out to the international community, where increased patient engagement is becoming the norm. The Parkinson’s Foundation also has partnered with Patient Focused Medicines Development, a worldwide organization that “aims to integrate the voice of the patient,” according to its website.

“It’s not just about doing this for the Parkinson’s community, which is our first and foremost mission, but also ensuring that we can replicate, we can grow and learn from each other,” Schroeder said.