“Can I Follow Your CGM?” Having a Conversation About Sharing Your Data
By Kerri Sparling
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By Kerri Sparling, with Dr. Bill Polonsky
At a recent TCOYD conference, Dr. Bill Polonsky, President of the Behavioral Diabetes Institute and Professor in Psychiatry at UC San Diego, asked me a very personal question.
“So, can I follow your CGM?”
Though Dr. Polonsky is one of the country’s foremost experts in how emotions play a role in diabetes and knows more than anyone that “numbers don’t make me who I am,” I was still defensive in my answer. “Sure,” I said, “but you can’t judge me.” So, for the sake of science (SCIENCE!), I added Dr. Polonsky to my CGM stream.
After watching my numbers for a few days, he said, “I was never thinking you were being ‘good’ or ‘bad’; it just seemed like you were having a crazy, and probably frustrating, couple of days. It made me feel more empathetic. It helped me to appreciate that almost everyone with diabetes goes through times that suck.”
The experience prompted Dr. Polonsky and me to find out more about the community’s perspective on data sharing. To share or not to share is one question, but once you decide to share, then what? What ground rules or discussion points need to be touched upon before sharing this information? We received dozens of emails with perspectives and opinions, none exactly the same.
It’s worth noting that there is a difference between adults and kids making data sharing decisions. For this etiquette discussion, we were really thinking about adults with diabetes. Teenagers and their parents deserve a whole separate discussion, although some of these points might be relevant for some teens out there. We’re working on a different piece specific to kids’ and teens’ CGM data-sharing etiquette, but for now we’re focusing on adults sharing their own data.
Stories from the Community: What’s your experience been like with the decision to share your CGM data?
A big responsibility. Terri Richert had the conversation with her loved one about sharing data, and it didn’t go the way she had imagined. “My boyfriend did not want to see the CGM data, and could only offer as a reason, ‘This is a lot of responsibility.’” She initially thought his response indicated a lack of love, but it was more a lack of understanding. Further discussion brought them to a middle ground that included CGM data share with certain caveats in place. “If a loved one says no, you can find out why and do your best to be understanding. It does not mean they don’t love you. It may just truly be they are overwhelmed by the responsibility until you break it down for them.”
Information overload. Mordechai, diagnosed with type 1 diabetes at the age of four, discussed sharing data with his parents and decided against it. “It's been years since my parents have had to look at my D-data, and I don't think that they would handle it all that well. I think that if they suddenly had access to up-to-the-minute blood glucose info, which they never had before, even when they were more involved in managing diabetes, that they would call me for every small variation off normal … which would be too much.”
Just a safety net. Marie, who is the mother of two small children and who lives with type 1 diabetes, views sharing her data not as a preventive tool, but a safety net. “Share hasn't stopped anything from happening, but it gives me a little more peace knowing it's there and could possibly help stop a bad episode, or at least catch one faster so someone can help if needed.”
Respect and Privacy
One big theme from respondents seemed to be respect and privacy. People with diabetes, regardless of age, wanted to have their right to privacy protected, and they were concerned about feeling nagged or judged while simultaneously appreciating the “safety net” of data sharing. Caregivers were concerned about over-reacting to data, being perceived as a nag, and the autonomy of their loved one with diabetes.
All these experiences demonstrate that ground rules need to be in place before CGM data is shared. Otherwise, it could be a recipe for hurt relationships and awkward interactions, with two parties unsure about what they are supposed to do and when. This is exactly why a data decorum discussion, or an “aware of share” chat, needs to happen first.
“There’s something potentially very wonderful about someone else seeing your numbers if they can handle it,” said Dr. Polonsky. “It’s one thing to say that diabetes is a roller coaster, but it’s another thing to see it real-time and have some appreciation for this extra job people with diabetes have. Even if you only offer this glimpse for a short period of time, it can be beneficial to your relationship with a loved one.”
Talking Points
Take a look through this discussion guide and see if anything jumps out at you. Do you want to print it out and sign it like an official contract? Do you feel inclined to circle the parts that resonate for you and point those out to a loved one or friend? Or do you want to underline the bits that seem over-zealous and highlight why they aren’t a concern for you?
However you respond is appropriate because these discussions are personal. Case specific. Really nuanced. And also kind of awkward in their own right. But setting and managing expectations is important, and can contribute to productive moments that can strengthen resolve and relationships while improving health outcomes. Which is quite a fine result for a nice chat over coffee about CGM data sharing.
So You Want to Share Your CGM Data: A Discussion Guide for That Potentially Awkward Conversation About Data Access
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This information is really personal, and I don’t want to feel judged for any of my numbers.
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When you do see my numbers, don’t ask “Why?” or “What happened?” I’m already asking myself those questions.
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[Editors Note: Some people like the question "why?" because they appreciate the support and help in figuring out what's happening. We recommend talking with your partner/caregiver to figure out what works best for you!]
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Thank you for caring enough about me and my diabetes to want to see this CGM data.
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It means a lot to me to have a safety net like you in place for emergencies, too. Thank you for willing to be that.
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So let’s share my data:
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I’ll be sharing my entire CGM stream with you. You can decide how and when you’d like to look at it, but I am asking you to respond only to ___________ [prolonged highs, lows below 60 mg/dl, etc. This is up to you to decide!].
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I’ll be sharing with you my ________ [Numbers vs. Graph? Both?] with the alarm set at _____mg/dL [again, up to you!]. I’ll probably connect you and me at these times: ______________ [All the time? Just certain times, like when I’m traveling on my own/at night/feeling sick?]
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These are my expectations of you: [here are a few suggestions – again, this is completely personal!]
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When you see that I’m having a low blood sugar that concerns you, please text or call me, and make it simple, like “You OK”? That’s it. And I promise to respond within 15 minutes.
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If you see a low in the middle of the night, please call or text me.
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If you see a “no data” alarm, please assume I am changing out my sensor or needed some breathing room from the CGM.
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If you see a high blood sugar, please give me space to handle it and don’t assume I’m not aware of it.
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If there are numbers you do want to talk about, we can set a time when it’s not an emergency situation and have a rational discussion about our concerns.
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There is an on/off switch for this, on both sides. If accessing this data causes difficulty and stress that is overwhelming to you, please tell me so we can talk about it. Or I can switch off your access for a while/forever. As the sharer, I can also decide to switch access on or off, depending on my needs.
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And lastly, thank you again.
