When we reported last summer about the Helmsley Charitable Trust developing an open national registry for type 1 diabetes, we were envisioning some kind of dry database, or perhaps a big listing of sorts like ClinicalTrials.gov.  We sure as heck weren't expecting the kind of social media "wow factor" that Helmsley has infused into its new site, MyGlu.org. Check it out:

The site is in beta testing now, scheduled to go fully live later this Fall.

Those of us who've had a sneak peek can see that it's clearly much more than just a shared repository for data (like the failed Google Health site and other so-called "PHRs") — but rather a full-featured online community that prompts people with type 1 to connect not only over basic commonalities like age group and pump use, but also interests and personality traits.

Users tag themselves as "busy" or "laid back," "exercise fanatic" or "animal lover" and so on. You're immediately presented with people who "match your mix" to connect with. You are encouraged to keep detailed medical records on file at the site as well (your new PHR), and you're also prompted to answer a "question of the day" about your diabetes. This might be something as simple as "How often does your doctor check your feet?" Once MyGlu.org gathers steam, this survey data will eventually help provide valuable insights into how type 1s are being treated around the country. {Worried about security concerns? So are they. See a Q&A document here on that topic}

But what the heck, right?  We didn't think this was going to be such a dynamic, colorful, and consumer-ish app either.  Are they trying to compete with existing DOC networks?

To find out, we took some time to talk with Janak Joshi, executive director of T1D First, a corporation put together by Helmsley about four months ago to spearhead the Trust's various roles in type 1 diabetes activities.

"Our goal is to integrate social experiences with health records to influence outcomes. Nobody is doing that successfully yet, not in Silicon Valley, in Boston, anywhere... the whole concept is challenging and a different journey; The important piece of our platform is to bridge that gap," Joshi says.

On the pure data side, Helmsley and project partner Jaeb Center for Health Research have already entered 18,000 patients entered into their new national registry as of August, while the Glu community site has only about 100 beta users active to date. The vision is to get physicians active on the Glu site as well, interactively sharing treatment data and tips with patients, Joshi says.

Patients on the Glu site will soon be able to not only search for clinical trials, but also add more self-reported data to be used in research projects, akin to what Patients Like Me has done.

"Influencing research is one of most important things to do for chronic disease management," Joshi says. "Healthcare is meaningless unless you have consumer-driven research. After all, where's the product registration card for healthcare? There isn't one!"

So it's a marrying of consumer-driven healthcare and research, and if the platform is a success, Joshi's organization hopes to "gift it to other disease states," including type 2 diabetes, of course.

One other unique aspect of the MyGlu.org network is built-in safeguards to allow kids up to age 13 to participate, pending parental consent (they're formally not allowed to sign up for social networks, not even Facebook — unless they lie about their age).

"We've set up the ability as a parent to create a dependent account, so parents can manage a minor's account.  As they turn 18, the account is 'graduated,' so they can choose to keep the parent on or not."

The consent for kids' accounts is an email is sent to the parent, much like signing up for Club Penguin or the Disney site, etc.

The third and most ambitious aspect of this project is a "bio-banking concept": Helmsley is hoping to collect 2,000 biological samples from type 1 patients (cPeptide, antibody levels, etc.) around the country to store in a central clinical data repository. A pilot program is currently underway in the Seattle, WA, area.

"We want to create a platform for bi-directional communications — from formal caregivers and informal caregivers. We're trying to address the reimbursement issue — to close the feedback loop with doctors, and influence their workflow."

"Nobody's attempted this before in the country. Not to the scale and complexity that we are.  The next 3 to 6 months will tell whether this is plausible, and then we have to figure out how to scale it," Joshi says, adding that, "what I'm telling you may not event be possible."

But if anyone can do it, it seems Helmsley's oomph and Joshi's experience and vision should make it possible (his passion about diabetes stems from a family riddled with type 1 and type 2 diabetics).

And what a fantastic vision it is! Health records + research + intelligent interactive physician-patient platform!  No matter what happens there, Helmsley and its T1D Exchange group have already accomplished something pretty breathtaking in the MyGlu.org interface, IMHO.

Disclaimer: Content created by the Diabetes Mine team. For more details click here.


This content is created for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn't adhere to Healthline's editorial guidelines. For more information about Healthline's partnership with Diabetes Mine, please click here.