HOUSTON — People with diabetes and their caregivers are increasingly turning toward online peer support communities to share and exchange information and experiences that affect outcomes and emotional health. However, it is crucial that diabetes care and education specialists begin to integrate evidence-based online peer-support networks into mainstream diabetes care, according to a speaker here.
The diabetes online community is loosely defined as online spaces where people gather, such as website forums and blogs, or via social media channels like Facebook, Twitter, Instagram and YouTube, Ashley Ng, PhD, APD, RD, a lecturer in dietetics and human nutrition at La Trobe University in Melbourne, Australia, said during a presentation at the American Association of Diabetes Educators annual meeting. The spaces offer health care providers and diabetes care and education specialists opportunities to engage with people with diabetes in new ways; however, any potential clinical and emotional benefits must be balanced with important safety and privacy concerns online, she said.
“The pros are [going online] does empower people with diabetes in their self-care management,” Ng said. “You get information, you don’t feel alone, you see people out there can achieve amazing things and you can do that, too. And, you have someone to talk to and relate to. Out of all of that, the better you feel about yourself and your care ... naturally, your time in range and your HbA1c targets improve. Emotional wellbeing improves as well. It’s the power of shared experiences.”
Ng said she often hears providers who worry about misinformation that could potentially be spread in such online communities, putting people with diabetes at risk. Such risks, Ng said, are overblown, as the communities tend to be self-regulating.
“People will say, ‘It’s online, are things regulated online? People can share misinformation,’” Ng said. “To that, when we look at the research, less than 10% include serious cases of misinformation. Yes, you can find information about risky behaviours, like ‘diabulimia’ or binge eating ... but this actually starts that conversation and makes people aware that this is a conversation you have to have with your health care provider.”
The bigger concerns, Ng said, involve personal safety and privacy while online. She encouraged social media users in particular to “be smart,” check privacy settings, and avoid sharing personal details or photos online. Providers and educators should remember that “you’re not anyone’s health care provider when you’re online,” she said.
The organization Beyond Type 1 offers a list of community forums and advocacy organizations that have an online presence as a starting point for providers who want to become more involved in the diabetes online community, Ng said. The community can offer opportunities for providers to have more informed discussions with patients.
“They feel like they’re going to be left out, but, no,” Ng said. “As providers, we are so privileged to be the gateway of information ... translating that into something that is meaningful. As clinicians, you have your own expertise as well. Don’t underestimate your role for the person with diabetes care. You can then help keep them safe online as well, as well as keeping yourself safe.” – by Regina Schaffer
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