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Patients worry over privacy, ownership of personal health data

While the “quantified self” movement is widely written about, who is quantifying what patients actually care about? Three new studies shed light on this trend.

Three-quarters of patients believe they should own their personal health data, including that which is self-tracked or captured by patient-owned devices. This is detailed in a report on the Health Data Exploration project performed by California Institute for Telecommunications and Information Technology and supported by the Robert Wood Johnson Foundation. The project seeks to provide researchers with self-tracking data recorded by patients. Patient worries about the privacy of their data may prevent this connection, as 57% said their privacy must be assured before they would share their data with researchers.

Researchers were also surveyed as part of the project and 89% of them agreed or strongly agreed that self-tracking data will be helpful to them and their work. Nearly all (95%) of researchers agreed that self-tracking data could answer questions that other data could not.

A Pew Research Center survey showed that patients with chronic conditions are more likely than others to both measure and share their health data. Of those with one chronic condition, 70% said they track at least one of the following indicators: frequency of headaches, diet or exercise. More than half (64%) reported that they share data with their physician. This survey is evidence that today’s technology isn’t needed for patients to take part in the self-monitoring or “quantified self” movement. Only 4% used an mHealth app to track a condition, while 41% did so with pen and paper.

Data recorded via self-tracking devices is valuable to patients and researchers if it’s accurate. Researchers from Arizona State University measured the accuracy of data recorded via wrist or waistband-worn devices against that of masks worn over the mouth and found the former didn’t always paint a full picture. Specifically, the wrist and waistband devices “do not detect light-intensity activities very well,” said Glenn Gaesser, a professor and the director of the Healthy Lifestyles Research Center at Arizona State University.

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