My Guide to Navigating Diabetes and Research Studies

I’m about one month into a study that involves T1D subjects and it’s been interesting, to say the least.

As far as I’m aware, nothing prevents me from going into more detail on what this study is, but I’d prefer to err on the side of caution and just provide the basics: It’s a 90-day study that requires me to wear a FitBit and answer two daily surveys about my sleep and exercise habits.

This isn’t my first rodeo with a diabetes-related study; in fact, I’ve done a dozen or so over the years with varying degrees of involvement. This might be the most intense one yet, though, because of its duration (most diabetes studies I’ve done have lasted a couple hours, at most). Since it is a more thorough study, it’s got me thinking about how I go about handling my diabetes when taking part in studies. Here are my tips on how to navigate the two in a way that reflects proper diabetes management as well as preserves the integrity of a given study.

It can be trickier than it initially seems to navigate around diabetes issues when participating in a research study.

Research the legitimacy of the organization conducting the research. I make every effort to find out who, what, when, where, why, and how the researchers will benefit from my participation. If it’s a well-formed study, then it’s pretty easy to find out all of this information because the organization will lay it all out before I can even sign up to be a participant. In my opinion, a research study that doesn’t tell participants what their data will be used for isn’t one worth doing.

Decide what I’m comfortable and not comfortable with sharing. Some studies can be quite…nosy when it comes to certain information. In the name of research (and ONLY in the name of research), I’m comfortable sharing some data like my weight, height, and even my A1c. I’m a little less cool with sharing, say, my entire medical history, and by that I mean that I wouldn’t do it. Some things I simply prefer to keep private so I always check in with myself before signing up for a study to make sure that I keep my comfort levels a priority.

Don’t be ashamed to ask about incentives. I can’t be the only one who has done a study in order to earn some quick cash. In keeping with the above statement about comfort/privacy, though, I haven’t done a study that I wasn’t comfortable with just to make money. But it’s definitely highly motivational when I’m in the process of learning whether I’m eligible for a study, and having a tangible reward given to me for my participation is inarguably nice.

Stop worrying about being judged for my diabetes decisions throughout the duration of the study. If I’m in a study that’s asking about my last 3 months’ worth of blood sugar levels or my last 6 A1c readings, I have to remind myself that I won’t be judged for the answers that I provide. After all, the researchers aren’t there to pat me on the back for doing a “great job” at “controlling” my diabetes or to scold me for not taking better care of myself. They are there to collect cold, hard data. So it’s important for me to remember that whether I’m an outlier, top-data-point, bottom-data-point, or something in between, it doesn’t make me any less of a human being with type 1 diabetes who tries her best each day.

Embrace the unique opportunities to make a difference. Not everyone I know has the chance to participate in research studies, so I view any research being done on type 1 diabetes specifically as a unique way for me to contribute to new discoveries (and possibly even a cure). Deep down, I’m a bit of a science geek who truly appreciates the methodology behind studies and experiments, so I really do think it’s special that I get to be a subject in some real-life research.

Diabetes Data Overload

I’ve always been a words girl – never a big fan of numbers. So isn’t my T1D ironic, being that it’s an illness ruled by numbers?

Think about it. PWD have a ridiculous number of…numbers to be concerned about on a daily basis. Between blood sugar checks, insulin dosage calculations, carbohydrate counting, basal rate testing, and more, there’s a lot to take into account.

And as time has gone on and technology has evolved, it seems like these numbers are constantly accessible on an endless volume of devices. I can determine trends using my Dexcom CGM – using either my mobile app or my sparkly pink receiver. I can scroll through my record log of blood sugars on my meter. I can find out how much insulin I took in one day using my OmniPod. I can even download several weeks’ worth of blood sugar graphs from my Dexcom by simply hooking it up to a computer.

It’s information overload.

As much as I love having the ability to access all of this data, it’s also too much to swallow at times. I could drive myself nuts looking through days’ worth of graphs and logs to figure out why I was inexplicably high at 3 o’clock in the morning one day, but I can also just chalk it up to a fluke and better spend my energy worrying about my blood sugar in the present (as opposed to the past).

The point is, it’s exhausting to have my life dictated by all this data. I wish I could take a break from it sometimes, but then again, it’s helped me become more accountable for my own health. And I can still express my hatred for numbers by using my love of words, so it’s not all that bad.