Do You Want My Data?

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On Monday afternoon I visited my endocrinologist for my quarterly checkup — actually, it seems that my visits the past few years occur every four months. Among the many places my endo can be found within the University of Michigan Health System, I see him most often on his clinic days at MEND.

MEND used to be about a mile from my office, so visits meant taking an hour or so over lunch. A couple of years ago, though, they moved to the Domino’s Farms complex, quite a bit farther away from work. Now for these checkups, I pretty much take off from work about quarter to two and call it a day.

Domino’s Farms is a vast, sprawling business complex, which in addition to housing my diabetes doctor is also the eponymous pizza place’s world headquarters. Oh, it’s not as exciting as all that. I mean, I’d rather be headed to the hospital for my checkup (see last week’s blog entry). And despite what you might think (or what I might hope for), sadly, there’s no pizza buffet in the waiting room.

But that’s neither here nor there; it’s simply prelude to talking about the encounter I had after I checked in.

I was approached by one of the clinic staff, who quickly began her pitch to sell me on a research project for people with Type 1 diabetes. From what I gathered, a couple of doctors at the clinic, in conjunction with doctors at six other diabetes clinics around the country, were participating in this T1D Exchange with six other centers around the country. Oh, wait, I have the flyer she handed me in my work bag. Here it is:

We are conducting research to learn more about type 1 diabetes management at different leading American diabetes centers, to see if we can fill substantial gaps in our knowledge and understanding of the best ways to manage type 1 diabetes. To reach this goal, we will be working with other top diabetes centers across the country to create a collaborative database of information.

The study, as far as my participation goes, involves only a quick online survey regarding my diagnosis, self-management practices, and a few other things (family history of illness, etc.). Oh, and I also sign away the right to allow them to access my medical data. They’ll be able to review my medical chart, history, treatment, and doctor visits for the next 25 years.

Would I like to be a part of this? Sure. I mean, do I have any concerns about my medical information being accessed for a research study? Nope.

After my visit with my endocrinologist and after I gave my co-pay and made my next appointment for late August, I found the research study lady, signed the consent form, took the iPad on which I was to answer the survey questions, and had at it.

I finished the survey in about eight minutes, apparently much quicker than anyone else had done (my wife has an iPad, and you add to that my weekly writing about my diabetes, and I don’t have to think much when it comes to answering diabetes questions!).

Other than participating in the study out of the goodness of my heart — to help these researchers help other people with diabetes as they try for better ways of management — were there any other incentives to get me to participate in the study? You betcha. After I finished my questionnaire, the next day I received a gift code via e-mail for $20 to spend on whatever I wanted at

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