This is a podcast version of my published scientific article “Precision Medicine in Parkinson’s Disease – Exploring Patient-Initiated Self-Tracking” (https://content.iospress.com/articles/journal-of-parkinsons-disease/jpd181314) created by Google Notebook LM.
Category: Podcast in English
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Webinar: PMD Alliance: “Disrupting the System”
On April 23 2021 I participated in a webinar organised be PMD Alliance titled “Disrupting the System: How Patients are Changing Research & Healthcare wHolistic™”. The webinar was presented in this way:
“I see my neurologist twice a year, about half an hour every time. That’s one hour per year in healthcare for my Parkinson’s disease. During the same year I spend 8,765 hours in selfcare, applying my knowledge and experience together with what I get from my neurologist to manage a difficult condition as best I can, ” says Sara Riggare, who describes herself as a mother, engineer, PhD student, and optimistic realist living with Parkinson’s. Sara is passionate about empowering people with PD to take charge of their treatment and take ownership of the disease. Join us for a discussion co-hosted by neurologist Indu Subramanian, MD and author and PD advocate Ben Stecher, to learn what Sara is doing to disrupt healthcare and research models towards a more patient-centered approach.
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Podcast: Never Delegate Understanding
Podcast hosted by Dr. Harlan Krumholz, cardiologist and researcher at Yale school of medicine. The series talks about ways that people can be more active in making health decisions and navigating the healthcare system.
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Ziek. De Podcast
I was a guest in two episodes of the Dutch podcast Ziek, hosted by Tamar Doorduin. I’m very glad that I was allowed to speak English and didn’t have to learn Dutch.
Episode 6 – Sara Riggare: developing Parkinson’s as a teen (ENGLISH)
In this two-episode series we follow Swedish patient advocate Sara Riggare’s journey from being an insecure teen who doesn’t want anybody to know about the weird symptoms she’s experiencing to becoming a badass advocate for patients’ rights.
Sara Riggare coined the Swedish term ‘spetspatient’ for patients who ‘know more than their doctor’. She is changing the Swedish healthcare system by demanding doctors to stop seeing these patients as a pain in the ass and to start taking their knowdledge, skills and experience seriously.
But Sara didn’t just come up with these ideas out of the blue. This first episode is full of Sara’s own #DoctorDrama: from her first neurologist who said her symptoms were all in her head to the one who simply declared: “You have Parkinson’s, have a good day”. But we also hear how Sara is actually glad she didn’t discover she had Parkinson’s until her thirties.
Episode 7 – Sara Riggare (part 2): knowing more than your doctor (ENGLISH)
If you liked the first episode with Sara Riggare, you will surely love this second one. In this episode, Sara Riggare tells us how she expanded her patient advocacy. We talk about the way healthcare is not well equipped to deal with the needs of chronic patients and Riggare explains how medicine started out in times of war, and how medicine’s hierarchical structure is well suited for treating acute illnesses but not chronic ones. Chronic patients need doctors who cooperate and who are not afraid to admit that sometimes, patients know more than their doctor.
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Podcast: When Life Gives You Parkinson’s
Podcast hosted by Larry Gifford.
There is a magazine called Fokus. It’s like Sweden’s Time Magazine. Fokus’ 2018 Swede of the year in medicine was Sara Riggare. She was diagnosed with Parkinson’s in 2003. 18-years after her first symptoms first appeared. Riggare, co-chair of the Patients Advocate Committee for WPC2019, is self-described as a Parkinson’s “im”-patient. A chemical engineer by trade, she returned to school and is a PhD candidate researching digital self-care for Parkinson’s. Riggare is a proponent of making use of the possibilities of technology and the World Wide Web to benefit individuals with Parkinson’s and empower them with knowledge. “From doing that,” Riggare says, “I learned to observe my body more consciously and I think I’m more attuned to how my body works and the medication effects it.”
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“Patients Doing It For Themselves” – BBC Radio 4
Very proud to be one of the people interviewed in this BBC Radio 4 program:
http://www.bbc.co.uk/programmes/b04grspl
Would love to hear your thoughts!
