For people who take insulin, self-measurement is a matter of life and death. No wonder, then, that people with diabetes who track their blood glucose have been so important in advancing techniques of visualization,and understanding data. At the Quantified Self Europe conference in Amsterdam this year, we were honored to host a panel discussion on Data Visualization and Meaning with Joel Goldsmith (Abbott Diabetes Care), Jana Beck (Tidepool), Doug Kanter (Databetes), and Stefanie Rondags (diabetes coach and blogger).
This discussion strikes me as widely important for self-trackers whether or not we have diabetes. Many of us will be tracking blood glucose in the near future. And the issues of data access, understanding, and clinical relevance that people with diabetes are working on resemble challenges commonly faced by anybody who is tracking for health.
For instance, Jana Beck was asked during the Q&A about her health care providers. How receptive are they to the important experiments she’s done to improve her health based on the data she’s collected? ”None of my endocrinologists have been very receptive to this approach,” she answered. “My A1C tends to fall within the range of what’s considered the gold range for people with Type 1. But I’m interested in optimizing that further. Often, I don’t even see them more than twice a year.”
Jana, Stefanie, and Doug all showed their own data in the context of discussing experiments and decisions that have had a major impact on their wellbeing. All were clear that the domain of these experiments and decisions is not healthcare as traditionally understood; but nor is it a matter of general fitness or lifestyle. The domain of these experiments is different and perhaps still unnamed. Self-collected data can and should essential health decisions, but the most advanced techniques of understanding this data are still being developed in an ad-hoc, grassroots way, by knowledgeable and open minded individuals who have a strong interest in learning for themselves.
At the end of the session I asked Joel Goldsmith, of Abbott Diabetes care, about the future prospects of the Freestyle Libre, a minimally invasive wearable blood glucose monitor that is not yet available in the US. (Disclosure: Abbott Diabetes Care was one of the sponsors of the QS Europe Conference.) The Freestyle Libre has a sensor in the form of a patch worn on the arm, and a touchscreen reader device that you lift close to the sensor to get a reading. There is no finger prick involved. While this and competing minimally invasive or non-invasive glucose monitors will almost certainly continue to be regulated as medical devices and understood as part of the health care system, many other people will also use them, and the flood of data and the questions that go with it will challenge our understanding of where this type of information should live.
The video above contains the full session, including the Q&A.