Parkinson’s podcast: Is the patient perspective the most important in research?


Author: Parkinson's Life editorsPublished: 14 July 2016

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Portland Podcast patient perspectives lead

July’s podcast hears from leading Parkinson’s advocates who offer a patient perspective on both research and clinical care

Does Parkinson’s community spend too much money on research and not enough on improving daily lives?

With the World Parkinson Congress (WPC) just a few months away, hosts Dave Iverson and Jon Palfreman invite two leading Parkinson’s advocates and educators, Pam Quinn and Sara Riggare, to discuss how they – as patients – view the world of research.

Pam Quinn was a professional dancer living in San Francisco when Parkinson’s arrived in her life 20 years ago, while Sara Riggare is an engineer and doctoral student at Karonlinska Institute in Stockholm, who first experienced symptoms as a teenager. Her research focuses on using patient perspectives to improve overall care.

In the podcast, both advocates give their opinions on what they hope can be accomplished at the WPC in Portland this September, and explore how we can determine the balance between funding research, and focusing on improving the daily lives of people with Parkinson’s.

The aim of the Portland Countdown series is to give listeners new perspectives on the latest advances in Parkinson’s research and treatment.

The shows, developed by the World Parkinson Coalition, are aired online on the first Tuesday of every month from June 2015 to September 2016 – when the 4th World Parkinson Congress takes place in Portland, Oregon, US. The podcasts are free and available for download.

The full schedule of show topics and guest speaker profiles is available here

Read more about Sara Riggare’s opinions on finding a cure for Parkinson’s here

Pam Quinn

Pam Quinn is a professional dancer who has had Parkinson’s disease for twenty years. She analyses patients’ physical functioning and tries to find creative physical solutions to problems posed by the condition

Pam Quinn

Sara Riggare

Sara Riggare is an engineer by training. She experienced her first symptoms of Parkinson’s disease aged 13, but wasn’t diagnosed until nearly 20 years later. Sara is currently a doctoral student at the Karolinska Institute in Stockholm and the topic of her research is “Personal observations as a tool for improvement in chronic disease”. She is an actively engaged patient with a vast network across the community and blogs at

Sara Riggare profile

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