Sara Riggare - "At the Quantified Self I Forget I Have Parkinson's Disease"

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Apr 13, 2015
by Stuart Milne
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Sara Riggare - "At the Quantified Self I Forget I Have Parkinson's Disease"

Patient empowerment advocate on the importance of self-care, keeping track of your own health data and the liberating aspects of the Quantified Self movement Sara Riggare at session 548 | The Promise of Data: Will this Bring a Revolution in Health Care?

Sara Riggare is a major advocate for patient empowerment, and for years has been collecting her own data to help her and her neurologist manage her Parkinson’s Disease.

While participating in Session 548 | The Promise of Data: Will this Bring a Revolution in Health Care?, Riggare spoke to Salzburg Global about how patients can take responsibility for their own health data to make shared decisions about their treatment.

She said: “I wanted to know more about the exact effects I had from my six different kinds of medication that I take six times a day with five different combinations and six different time intervals.

“A diabetic has the ability to measure quite easily, although that’s a very simplified picture. They can measure their glucose levels, so they know how active their disease is. In Parkinson’s it’s more complicated (there is no one simple measure), so I had to look around for what was out there, and found a finger-tapping test.”

As chief patient officer with Nerve, a small Stockholm-based digital health startup, Riggare has worked to develop an app that uses finger-tapping to help patients easily track their medication intake and other interventions like exercise and diet. The idea is to make doctor’s visits more beneficial and efficient for both parties by enabling the patient to bring in large volumes of data they have collected themselves.

“I see my neurologist once or twice a year for about half an hour every time,” she said. “That’s one hour per year. The rest of the year is 8,765 hours spent in self-care. The end goal is to have less time in health care.

“To me self-care is every decision, every action I take relating to my health that’s outside of health care. If I decide to take my medication a quarter of an hour later, that’s self-care. If I travel across the Atlantic and need to shift my timings, the decision I make in that context is self-care.

“With a very complex chronic disease like Parkinson’s it takes a lot of conscious decisions to manage it in the best way. I very strongly believe that the more conscious decisions I can make, the less I need to care about Parkinson’s Disease.”

Riggare says she is very fortunate to have an excellent relationship with a neurologist she has partnered with for over 20 years, who has told her that she now knows more about Parkinson’s research than he does.

She said: “It’s not about him knowing more than me because he has so many more diseases to keep track of, whereas I’m focused on one in particular. We have a very good collaboration with true shared decision-making.

"When I come to him he doesn’t say, ‘Are you taking your medication as prescribed?’ Instead he says, ‘Can you tell me how you are taking your medication now?’ Then he puts that in the medical record.

“I think shared decision-making is not happening more because a lot of health care people think it is the end goal, whereas for me it is merely a tool and a means to reach the goal.”

Riggare is heavily involved in the Quantified Self (QS), a movement founded by Kevin Kelly and Gary Wolf of WIRED magazine dedicated to using technology to self-monitor aspects of a person’s daily life.

She wears a tracking device that monitors activity and sleep patterns, but doesn’t feel compelled to monitor her data every day.

“If things seem to be working fine, I just want to get on with life,” she said. “That’s the big difference between the normal geeky QS tracker and the people with chronic diseases. They would probably rather commit suicide than admit they had missed a day of data, but for me the purpose is different. It’s a needs-based approach.”

The Quantified Self has a special place in Riggare’s heart that sets it apart from the other conferences and meetings she regularly attends as a participant and speaker.

“At the Quantified Self I forget I have Parkinson’s Disease,” she said.

“Everybody at QS tracks everything – they’re crazy. There’s no QS-er that isn’t a bit crazy, and I’m definitely one of them. Everybody tracks something, or often several things, but no one puts a judgement on anyone else’s tracking. Everyone is interested in what they do, not what they have.

"It’s so liberating to really be just Sara.”


Sara Riggare was a participant at the session The Promise of Data: Will This Bring a Revolution in Health Care? The session is part of the Salzburg Global series “Health and Health Care Innovation in the 21st Century” and was held in collaboration with the Mayo Clinic, Arizona State University, The Dartmouth Center for Health Care Delivery Science, and in association with the Karolinska Insititutet. More information on the session can be found here: www.salzburgglobalseminar.org/go/548

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