It’s Wednesday. That means two things must be true. Lisa is practicing with her community chorus, and I’m looking forward to participating in my online diabetes support group, DSMA.
Technically DSMA (Diabetes Social Media Advocacy) is about how people in the diabetes community can use social media tools (like Facebook, Twitter, blogs, e-mail, Wikis, etc.) to work effectively with patients and care providers. But in actuality it seems like a virtual support group for people with diabetes. We discuss how we interact with doctors, how we cope with the personal and societal stresses due to our beleaguered pancreases, what works for us in terms of self-management, etc. Occasionally, we talk shit about our real-world advocacy groups (the ADA, the CDA, JDRF) and — amazingly — sometimes they engage us and change their practices to be more responsive.
(There’s also a fair bit of nonsense that’s interspersed among the three to five questions that the moderator doles out over the hour. We’re all there to learn from each other and to advocate, but we’re also just normal people who need to blow off a little chronic illness-induced stress. Does this lower the signal-to-noise of an already fast-paced conversation? Yes. But I also think it adds some extra humanity to what could otherwise be a very clinical or business-like subject.)
I found being part of a “real-world” support group for a few years after I was diagnosed a mixed bag. I liked hanging out with other people with diabetes, talking about our disease, and learning things from medical professionals. Unlike DSMA, my hospital support group was full of people with type 2 diabetes. That makes sense, given that T2s make up about 90% of the population of people with diabetes. It’s useful to get their perspective, of course, but I think you could only have a regular congregation with so many T1 people online. And we get people from all over North America. (Even New Zealand sometimes) One of the best examples of the power of social media to touch the lives of people with diabetes might just be DSMA itself.
The one thing that I do miss about hospital-run support groups is the interaction with people who aren’t patients. While we do have participants who have multiple roles — for example, patient and dietitian or patient and nonprofit advocate — what we don’t have are many nurse educators, doctors, pharma reps, or hospital administrators who don’t also have diabetes. The point of DSMA is that we’re all advocates for our own health, but I feel like we could gain a lot by including the one group that’s frequently absent online.
I know from my work as a patient advocate at a Boston-area hospital and from conversations at the WEGO Health Summit in late August that bringing healthcare practitioners (HCPs) and pharma reps into the online world is fraught with regulation and peril. But I would love to figure out a way that we can replicate online the knowledge transfer that happens in real-world support groups.
How do you convince doctors, nurses, nutritionists, drug reps, and other hospital staff to be available to answer a blitz of questions for an hour a week? Logistically, how would that even work? Maybe we’ll talk about it one day on DSMA? :^)