Podcast Episode 45: Patient Engagement in Research: The Parkinson’s Advocates in Research Program (PAIR)

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Medical research is a long and complicated process. Discovering the underlying causes of Parkinson’s Disease (PD), finding new treatments, or searching for a cure involves laboratory work, animal testing, and clinical trials with control subjects and then people with Parkinson’s. One important way to facilitate that research is to involve people affected by PD. The Parkinson’s Advocates in Research program (PAIR) at the Parkinson’s Foundation trains people with PD and caregivers to become involved in the research process, advising researchers on the important topics and helping design successful clinical trials without being overly burdensome to people participating in the trials. In this podcast, Karlin Schroeder, Director of Community Engagement at the Parkinson’s Foundation, and Kevin Kwok, a Research Advocate in the PAIR program, describe the program, its aims, and how to get involved for anyone wishing to become an advocate.

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About This Episode

Released: January 1, 2019

Karlin Schroeder, MA

Karlin Schroeder is the Senior Director of Community Engagement at the Parkinson’s Foundation, where she leads the Parkinson’s Advocates in Research program (PAIR). Through this program, Karlin runs the Parkinson’s Foundation Learning Institute, an intensive multi-day course that has trained over 300 people with Parkinson’s and their care partners in the research process and provides tools and resources for successful collaboration with research teams. Karlin creates and directs projects to incorporate patient expertise into research with industry, academic centers and government. Her work includes improving diversity in patient advocacy in Parkinson’s disease and defining metrics in patient engagement in research. She is a member of Patient Focused Medicines Development and the Clinical Trials Transformation Initiative Steering Committee.

Kevin Kwok

Kevin Kwok is the Head of Patient Engagement at Theravance Biopharma in the Bay Area. Previously, he was a partner at a leading executive recruiting firm, where he led the North American Life Science practice. Kevin earned his doctorate degree in clinical pharmacy from the University of Michigan. An avid lifelong wannabe athlete, Kevin was diagnosed with Parkinson’s in in his late 40’s. He has taken control of his Parkinson’s with bold irreverence, optimism and biting humor. As a self-proclaimed amateur “PD satirist”, he has been a speaker and patient advocate for several foundations and has been featured on national news programs and webcasts, speaking about living a high-impact life, thanks to traditional therapies and a “zen-aggressive lifestyle.” Kevin joined the Parkinson's Foundation Parkinson's Advocates in Research program in 2014.

For more insights on this topic, listen to our podcast episodes “Personalized Medicine: The Voice of the Patient” and “Retention Rates in Longer Clinical Studies”.


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