Sara Riggare - “Even Without Being Actively Supported by Health Care, Patients Can Do a Lot for Themselves”

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Apr 20, 2017
by Oscar Tollast
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Sara Riggare - “Even Without Being Actively Supported by Health Care, Patients Can Do a Lot for Themselves”

Engineer and health informatics researcher discusses patient empowerment and her connection with Salzburg Global Sara Riggare returned to Salzburg Global in March to attend Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship

From time to time, extraordinary people walk through the grounds of Schloss Leopoldskron. Sara Riggare, an engineer and health informatics researcher, is one of those people, acting as a source of inspiration each time she’s attended Salzburg Global Seminar. Riggare, who’s currently pursuing her doctorate at Karolinska Institutet in Stockholm, Sweden, is challenging the traditional role of patients in managing their health through technological innovation and data collection.

Riggare, diagnosed with early onset Parkinson’s disease, practices self-tracking to help manage her medications, and other aspects. She returned to Salzburg Global in March to attend Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship. Once again, Riggare was able to provide a unique perspective as a patient and researcher to a mix of health professionals. She said, “This session is about empowering patients in their collaborations with their physicians, and that’s basically what I do, both in my life and in my work, [and] in my research. So, it was irresistible to me.”

During the session, Riggare gave her fellow participants a presentation on her experiences managing her Parkinson’s disease, which she’s lived with for more than 30 years. She explained how she used her data and observations to understand her disease better and communicate what she learned with health care professionals. Riggare says her presentations “show the power of data and how even without being actively supported by health care, patients can do a lot for themselves.”

Riggare highlighted the “many interesting discussions” which took place during her latest session and the benefit of having more patients in these conversations. She said, “There’s power in numbers and to hear the stories of other patients over lunch, over coffee, and at the sessions makes me understand even more about what we need to do to see this through and make the world see a new kind of health care system.”

A new form of health care system will involve different approaches to recording patients’ journeys. Riggare helped inspire one of these new methods, which was presented to her and others on the final day of Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship. A group focusing on person-centered health care came up with the concept Self-Actualized Realization and Autonomy, also known as SARA. In this model, a user is a person, not a patient, who collects their data and uses it as a citizen scientist.

Riggare first attended Salzburg Global in 2015 for Session 548 The Promise of Data: Will this Bring a Revolution in Health Care? Following this, she returned to Sweden with a refreshed perspective. Riggare created an app and took on new research projects. She said, “This place is just amazing. It brings together great minds, great thinkers [and] great people with amazing experiences and stories to share - from all over the globe to a place that’s probably more like paradise than anything else on earth.”


Sara Riggare attended the Salzburg Global program Toward a Shared Culture of Health: Enriching and Charting the Patient-Clinician Relationship. This program is part of the multi-year series Health and Health Care Innovation in the 21st Century. The session was supported by OpenNotes. More information on the session can be found here: www.salzburglobal.org/go/553.