The Parkinson’s Foundation makes research more efficient and effective by involving those living with Parkinson’s disease (PD) in the research process. People living with PD are experts because they know this disease, its symptoms and how it impacts their lives. The Parkinson’s Foundation Research Advocacy Program (formerly referred to as Patient Advocates in Research) trains research advocates ― people with Parkinson’s and care partners ― to provide their expertise to researchers in academia, government and pharmaceutical companies. Historically, there has not been a universal process in place to help researchers engage research advocates in their work. The Parkinson’s Foundation is changing that.
In May 2020, the Parkinson’s Foundation published an article in the scientific journal Health Expectations outlining a patient engagement framework developed from the Foundation’s 12 years of experience working with research advocates. The framework is designed to help researchers integrate and measure patient engagement in their work, ultimately leading to better studies.
“Over the last decade the Parkinson’s Foundation has learned that there is critical information pharmaceutical companies and academia are missing by not involving people living with Parkinson’s in the research process,” said Megan Feeney, author and Parkinson’s Foundation Senior Manager of Community Engagement. “There are also many researchers open to making patient engagement a priority, but we need evidence to promote this practice.”
This framework provides a clear outline for researchers to follow. “The goal of this framework is to make patient engagement a common practice in the research process for all health conditions, whether a researcher has experience working with patients or not,” Megan said. “This patient engagement framework can be customized by any researcher for any study.”
Patient Engagement Leads to Smarter Research
Why is patient engagement important? Without patient input, research may target the wrong outcomes or design trials without consideration of the preferences of people living with Parkinson’s. In one clinical trial, people with Parkinson’s were excited to help test a new PD medication. However, the clinical trial requirements were burdensome. Due to poor recruitment and retention, the trial could not continue. Had the researchers designed a clinical trial allowing for patient engagement, it could have been more patient friendly, while enrolling and retaining study participants. Read the article for more case studies.
“When you design a clinical study with input from people living with Parkinson’s, each part of the study can be tailored for the community you are trying to help without impacting the quality of the science, making research faster and better,” Megan said. The patient engagement framework is now available for all organizations to utilize and tailor to their needs to expedite research and make it relevant to their community.
Parkinson’s and Beyond
Not every organization has a patient engagement process in place, like the Parkinson’s Foundation. Parkinson’s is a complex disease with multiple symptoms (non-movement and movement) that can make the patient engagement process difficult to navigate without the proper planning and resources. The Foundation works to mediate patient engagement so that both people living with Parkinson’s and researchers can contribute and have a positive experience.
“We work with researchers and other patient advocacy organizations all over the world to overcome the challenges that people might experiences when engaging with patients for the first time,” said Karlin Schroeder, co-author and Parkinson’s Foundation Senior Director of Community Engagement. “The ultimate goal is to create an environment for success that helps the most people possible.”
The Parkinson’s Foundation will continue to use its patient engagement framework, helping people with Parkinson’s become empowered to fight this disease through active involvement. “We hope this framework can become a blueprint, reaching beyond Parkinson’s so other patient advocacy groups can utilize this model for other life-impacting diseases and increase patient engagement for the greater good,” Karlin said.
If you are interested in becoming a research advocate or working with research advocates, please email Karlin Schroeder at KSchroeder@parkinson.org.
Read the full article online “Utilizing Patient Advocates in Parkinson’s Disease: A Proposed Framework for Patient Engagement and the Modern Metrics that Can Determine Its Success in Health Expectations” in Health Expectations.