In a recent article in the journal Health Affairs, researchers from the Patient-Centered Outcomes Research Institute (PCORI) referred to recent studies about patient attitudes about the use of patient-contributed data. It’s clear that collecting information from wearable Health Tech devices that the patients may already be wearing can offer great advantages to health and medical researchers. These devices can provide large quantities of detailed data about individual patients at a very low cost. In many cases, this information can be generated over a period of months or years, providing valuable longitudinal perspectives on a patient’s health. And when aggregated over a large population, the information can reveal insights into the progression of conditions and diseases, as well as point to new treatments.
As with any data collection process, however, there are limitations. It is difficult to recruit participants for such research studies, and efforts must be made to retain those subjects in the program in order to get the required longitudinal data. Given the reliance of personal fitness and other wearable Health Tech devices, retention becomes more of a challenge in the event that the device gets lost, broken, or simply abandoned by the subject.
The good news for researchers, according to the studies cited in the article, is that potential subjects are inclined to share their data. In one study, 92 percent of the patients were willing to participate in order to help advance an understanding of their disease. 94 percent believed that the information could help patients with the same condition in the future.
On the other hand, privacy concerns are also an issue. In the first study, just over half required wanted a guarantee that their data would be kept private, and three-quarters worried about the use of their data without their knowledge or permission. In a second study, more than 90 percent of those surveyed indicated that the anonymity of their information was important.
In an age where we appear to willingly surrender personal information in return for free services on the Internet and other parts of our lives, it is interesting to note that most people prefer to keep their health and medical information private, even though they are willing to contribute it for the greater good. This is a concern that developers of Health Tech devices will have to consider carefully as they design their products and services.
