Before obesity, and especially childhood obesity, became such a well-publicized issue, people with diabetes were early adopters of any available means for sharing information and offering mutual psychological and emotional support. Along the way, some pretty sophisticated subcommunities developed. At the Diabetes Social Media Advocacy website they say:
Through platforms such as [F]acebook, YouTube, podcasts, blogs, and online communities such as Diabetesdaily, TuDiabetes and dLife, people participate in the informal network known as the Diabetes Online Community (DOC)… The DOC provides places online for people affected by diabetes to communicate with others who understand the mental, physical, and emotional challenges of this chronic condition… They share their personal experiences of living with diabetes, including health insurance issues, depression, motivation, mishaps, relationships, and much more.
A reader of Childhood Obesity News emailed an anonymous, personal comment about a community that deserves a listen. It’s not about obesity, and it’s not even about Type 2 diabetes, the kind most often associated with obesity. This person lived since birth with Type 1 diabetes. The quotation is included here because it expresses the identical sentiments shared by obese kids about their social networks:
Isolation, dread, fear, constant commercials and warnings and pictures of ‘diabetic complications’ and overbearing parents make childhood diabetes rough on youngsters. [E]nough for anxiety disorder, panic attacks and PTSD. For me, interaction with other Type 1’s of all ages made the only difference.
Any questions and doubts about the ability of social media to help obese kids today can probably be addressed by adult diabetics who had the advantage of using various resources, including electronic ones, during their formative years.
On behalf of National Public Radio, journalist Lauren Silverman got acquainted with a woman named Kerri Sparling who, diagnosed at age 7 with Type 1 diabetes, went to diabetes camp and found a “true community” there. She describes the current online community as “vibrant. On YouTube, for instance:
There are videos with advice on everything from removing an insulin pump to telling your date you have diabetes.
There is a downside for patients, which is an upside for pharmaceutical companies. All the potential customers have considerately banded together in informal associations and formal organizations and made themselves very convenient “targets,” as they say in the industry, for the sales force to address. In fact, rather than confine themselves to showing up in the established venues, pharmaceutical corporations have started their own forums, discussion groups, blog platforms, etc.
The social media created by companies to supposedly serve the diabetes community are not greeted with universal joy. Silverman implies that there is in fact some suspicion involved:
… [I]t’s not just serving the community; it’s serving companies’ bottom lines. Treating diabetes is extremely profitable. Every year Americans spend more than $100 billion on diabetes care. So, in addition to tweeting about new products, pharmaceuticals are sponsoring bloggers like Sparling.
Sparling is of course the very same person who went to diabetes camp as a little girl. She believes a company needs to hear from its customers so it can better improve its products, and does not believe the diabetes community is made up of naive innocents who can be easily duped by advertisers. They are the ones who know what’s going on in the bodies and minds of patients, and they want the pharmaceutical companies to listen, and the mechanisms for that seem to be working.
But Sparling also collects some freebies and gets hired for speaking gigs, all of which is duly disclosed. Still, there is a feeling in some quarters that a disclosure nobody bothers to read is not enough. Some people are asking for clear and enforceable rules, and in this area, one of Silverman’s asides is rather worrying. She says:
An FDA spokesperson says the agency is currently working on guidelines for drug companies and social media, but declined to make someone available for an interview.
Wait, what? Doesn’t the government work for us? Isn’t it on our payroll? Isn’t it supposed to explain what it’s doing, when asked? As if that weren’t discouraging enough, Silverman also interviewed a medical professional who cast doubt on the usefulness of social media for his patients. Dr. Jason Bronner said:
There’s no proof in diabetes that social networking is helpful… Patients are more likely to get information from the Internet than they are from the doctor… As a doctor, basically what you want is to make sure the patient is relying on an accurate source of information, and if you don’t know that they’re on these websites, you’re not going to know they have a chance of getting misinformation.
Your responses and feedback are welcome!
Source: “About DSMA,” DiabetesSocMed.com
Source: “Social Media Help Diabetes Patients (And Drugmakers) Connect,” NPR.org, 12/03/12
Image by chefranden (Randen Pederson).