If you are using (or planning to use) the do-it-yourself Loop automated insulin delivery system you may be eligible to join an observational study conducted by the Jaeb Center for Health Research and sponsored by the Helmsley Charitable Trust. More details can be found on the study home page.
The study is being done in collaboration with Loop developers and Tidepool to collect information from adults and children with type 1 diabetes using Loop. The purpose of the study is to collect information from 300 - 1,000 adults and children with T1D using Loop in the United States. This information will be used to learn more about how well Loop works, what problems users have, how often severe hypoglycemia and diabetic ketoacidosis occur, and how well the system controls blood sugar levels.
Hi @dm61, I saw this notification and I was tempted to join. But I was a little concerned about how the data would be used. It seemed like there’s a chance you can be identified from it?
Good point. For people with access to study databases it would likely be possible to make connections between identifiable info and data collected, such as surveys and data uploaded from the Health app. On the other hand, as one would expect, the consent form has basic privacy language such as: “Unless the law requires it, your name, email address, or any other direct identifying information will not be used to identify you.” as well as: “Study results without the identifiable information may be shared in medical journals and at scientific meetings. Your records will be confidential. No one will share your identity in a medical journal or at a scientific meeting. Results from the study will not be sent to you.” Personally, I am not really concerned about privacy issues in this study.
I guess my perspective is as a caretaker for a minor. I feel like I need to be a little bit more cautious with my son’s data than I would be with my own, and while I’m sure the LHCT is great, it’s an organization I don’t know. And it’s a little different from an institution like a university, whose IRB process I’m a little more familiar with. I would just want to make sure their data processes are really robust before I send them such detailed information on my child.
And I do think the potential dangers are higher for kids sharing data. For instance, I’ve read stories about doctors or schools being very hostile to DIY technology and denying refills or care if parents don’t stop using it, and separately I’ve read about parents being reported to CPS for their children having lows or highs when a school doesn’t want to comply with their care plans, for instance. So in my mind there are enough situations where parents sharing data with seemingly responsible people has unforeseen consequences that I would feel cautious on this side. On the other hand, I’m very likely overly vigilant that way and I don’t want to dissuade other parents who are probably much less paranoid than me.