About this episode
Dr. Sara Riggare discusses her journey with Parkinson's disease and the importance of patient-generated knowledge in healthcare.
Welcome to Pulse: Amplify, where we sit down with the leaders and changemakers shaping the future of health. Dr Sara Riggare has spent more than a decade challenging one of healthcare’s most deeply embedded assumptions - that patients are passive recipients of care. Living with Parkinson’s disease and trained as a chemical engineer, she has built a body of work that reframes patients as active producers of knowledge. In this episode, Sara shares her journey from diagnosis at age 32 to completing a PhD in ‘personal science’, where she studied her own condition to generate new insights into Parkinson’s. Her now-iconic “1 vs 8,765 hours” concept highlights just how little time patients spend in the healthcare system, and how much of their lives, and data, exist outside it. We explore why healthcare systems still struggle to recognise patient-generated knowledge as valid, and how this creates an epistemic gap at the heart of modern medicine. This is a powerful discussion about power, knowledge, and what it would take to truly design healthcare around the people who live with disease every day. Resources: Patients Are Not Waiting For Permission Lancet Connect with Sara Riggare…
People in this episode
Host: Pulse
Guest: Sara Riggare
Topics covered
- patient empowerment
- healthcare systems
- Parkinson's disease
- personal science
- patient-generated knowledge
Keywords
- Parkinson's
- patient empowerment
- healthcare
- personal science
- knowledge production
Mentioned in this episode
Organizations: Pulse+IT
Books & works: Patients Are Not Waiting For Permission
Places: Lancet
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