The Psychology of Data Sharing
When Benny Simms comes home from school these days, his mom no longer greets him by asking about his blood glucose level. Most days, in fact, the 11-year-old Davidson, North Carolina, middle schooler doesn’t mention his type 1 diabetes to her at all, and she doesn’t need to ask: She already knows.
Stacey Simms has no mom superpowers. The Simms family uses the Share feature on Benny’s Dexcom G4 continuous glucose monitor (CGM), which allows his mom to watch his blood glucose readings in real time, from afar, using the Dexcom Follow app. The family is one of thousands participating in diabetes data sharing, a relatively new development in device technology. The Dexcom Share and other independent apps that “hack” CGM data help people with diabetes see their glucose readings constantly, displayed on phones, smart watches, and more.
With the Dexcom Share, the CGM transmitter on Benny’s body sends data to the G4 receiver he carries with him, which in turn sends the information to his phone via the Dexcom Share app. The app sends that information to the cloud, an online storage system, either over Wi-Fi or cellular service. The Dexcom Follow app on his mom’s phone pulls that data from the cloud. (The G4 and G4 Platinum CGMs are no longer on the market, but the G5 device also works with the Follow app, bypassing the Share tool and sending readings directly to mobile devices.)
The constant stream of knowledge to his family removes some of the mystery and urgency surrounding Benny’s diabetes. “My favorite part about the Share is how it’s changed the conversation when we’re together,” Stacey Simms says. “I don’t have to say to him as soon as he walks in the house, ‘What’s your blood sugar? What’s your number?’ I can just look at my phone, and if I need to tell him something, I can. But I don’t have to ask anymore.”
Peace of Mind
Data sharing has the power to transform diabetes management by engaging people with diabetes and their caregivers in real time and creating communities of support. If you check with the thousands of people who use the Dexcom Follow app, the Medtronic MiniMed Connect—which sends CGM and insulin pump data to an Apple device—or do-it-yourself apps that allow users to “hack” their devices to share their data online, they’ll tell you it increases peace of mind and offers better blood glucose control. But like any technology, there are rewards as well as potential risks.
In the Loop
For some people with diabetes and their loved ones, using data sharing is a way to feel safer and more secure in managing diabetes. The Wedding family of McKinney, Texas, uses Nightscout to help monitor their daughter’s blood glucose. Carson, 13, has type 1 diabetes.
The Weddings were not big fans of Carson’s CGM before they started using the do-it-yourself app Nightscout in April 2014. Because the CGM receiver stayed with Carson, it wasn’t easy or convenient for her parents to check the screen often, especially at night. But once they downloaded the Nightscout app, which transmits data in real time from a Dexcom CGM to any Bluetooth-capable device, they felt more secure in knowing what Carson’s glucose levels were at all hours—with fewer middle-of-the-night finger-stick checks.
Carson can set extra alerts to notify her, via her Pebble watch, when her glucose is rising or falling rapidly, or when she’s hit a preset low glucose level. Her parents can do the same on their watches and phones, and they can set different thresholds: While Carson is notified when her glucose hits 80 mg/dl, her mom doesn’t get an alert until Carson is at 70 mg/dl. So Carson can treat the low and move on with her day—but if she doesn’t, her mom can give her a nudge with a text message. “It’s just a tool that helps her stay in range as much as she can and feel better as much as she can,” says her mom, Melinda Wedding. “It’s a tool that helps her improve her daily life. That’s really our goal.”
George Grunberger, MD, FACP, FACE, president of the American Association of Clinical Endocrinologists, sees the greater control his patients and their families gain from data-sharing technology as the next step in diabetes care. “This technology has an amazing potential. It totally revolutionized how we deal with patients from a physician’s perspective,” he says. “The more [data] patients bring to my attention, the more they are engaged. They are motivated and ambitious enough to realize that this is important and serious.”
For the Simms family, remote monitoring has allowed them peace of mind as Benny grows up. When his class took a three-day trip to Washington, D.C., Benny’s parents didn’t have to chaperone as they had in the past. A trusted neighbor traveled with the class, and Benny’s mom monitored from home. Before the trip, Benny and his parents talked about how he would handle his diabetes, and watching from afar, his mom saw that he managed just fine. “It was very helpful,” Stacey Simms says. “He did have a low overnight, but I sent him a text. I could sit and watch the arrow go up, and then I went back to sleep.”
But she also understands how constant monitoring could be burdensome. “It was a little stressful to monitor on my phone,” she says. “I can see how people can get really carried away.”
The Privacy Problem
A major concern for those skeptical of data-sharing technology is privacy and how secure someone’s data is. Deborah Peel, MD, founder of the nonprofit Patient Privacy Rights, says there is no way to prevent the use, disclosures, sales, and trading of diabetes data and other sensitive information. And there is no enforceable U.S. law to control who can access patient device data, or what they might do with the information, Peel says. Even the Health Insurance Portability and Accountability Act, or HIPAA, allows the sale of some medical data without patients’ knowledge. “Free apps are free because your data is sold,” Peel says. “Remember, there’s no free lunch.”
Alida Brill, social critic, advocate, and author of Nobody’s Business: The Paradoxes of Privacy, likens the development of diabetes data sharing to fertility treatment innovations of the past—pushing ahead before ethical regulations can help shape the technology’s use in real life. She says that while we have the know-how for this type of technology, guidelines around how the technology is used, and who can use it, have yet to be thought out.
Once your data is out there, there’s no way to take it back, says Brill. Even among families, the question remains: How can someone maintain bodily autonomy—the idea that you alone can decide what happens to your body—when others have constant access to something so deeply personal? “Once you allow people into that information, other than physicians, how can you possibly maintain autonomy? You’re trusting family members, spouses, etc., to not tell other people the personal information you’ve shared with them,” she says.
Negotiation around autonomy can be tricky. Riva Greenberg, 62, of Brooklyn, New York, recently started using a Dexcom G5 CGM. Her husband, Boudewijn, can now track her blood glucose on his Apple Watch. In an April post on her blog, Diabetes Stories, Greenberg described the experience as “sharing something most intimate.” Her husband now sees her every attempt to keep her blood glucose in range.
The couple realized they were crossing into new territory in their relationship. While waiting for her low blood glucose to respond to a fast-acting carbohydrate source, her husband, who was with her, told her she was still low. Then he asked if it was OK to tell her.
“We realize we may need to establish some friendly boundaries as this sharing continues,” Greenberg says. “But this gives Boudewijn the closest experience of what it’s like to live with type 1 diabetes, and that’s transformational. And he’s thrilled he can now do something to keep me safer.”
Hide and Seek
While some people with diabetes might not mind sharing their glucose data, particularly children, there could come a day when they want a little more privacy, Brill says. Because of the stigma surrounding diabetes, some may feel shame or guilt, believing their highs or lows should always be in their control or that their numbers are a reflection of whether they are “good” or “bad.”
Susan Guzman, PhD, clinical psychologist and cofounder and director of educational services with the Behavioral Diabetes Institute, says that shame is what drives her patients to opt out of using data-sharing technology. In fact, she says, none of her patients who use the Dexcom G5 have chosen to use its sharing function yet. “You don’t want to be judged,” Guzman says. “It could even be the feeling of [diabetes] being more of their identity than they want [it] to be, and that’s really a fear, too.”
Risks and Rewards
Despite the risks of data sharing, proponents say that the benefits outweigh any other issues users might face. The Weddings, for example, use their Nightscout app to give Carson a break from her diabetes. On a day when they’re all together, they’ll monitor her glucose and help her bolus with her pump to give her relief from the numbers. Breaks like these protect her from diabetes burnout, her mom says. “I know she gets tired of knowing her numbers.”
But mostly, Carson manages her diabetes with help from her Pebble watch and by seeing her numbers. “It’s a much easier way to see my blood sugar,” she says. “I like that I can be more independent if I like.”
Nothing But Numbers