Times keep a'changin' in how the diabetes industry interacts with patients.

Remember how it used to be, many years ago? When these companies making diabetes devices and medicines didn't take our views into consideration in making decisions?

Then came the first-ever Diabetes Social Media Summit, in which Roche hosted a bunch of bloggers and online advocates back in 2009.

Now, after four consecutive patient Summits, with other pharma giants such as Medtronic and Lilly following suit, Roche has actually Patients Welcomedecided to pull the plug on its yearly gathering -- while new kid on the block Valeritas is holding the first-ever summit focused solely on PWDs living with type 2 diabetes.

We wrote about the D-Community's evolution a few months ago, and have evaluated how many diabetes companies have been more actively engaging with PWDs in various ways through summits, Twitter and Facebook, the blogosphere, and projects and initiatives.

It's interesting to see how this kind of interaction is expanding and contracting, and to see the T2 community stepping up and being embraced as well!

New Kid on the Block

Valeritas is the New Jersey-based company that makes the one-day-wear patch pump V-Go system, which is aimed at T2s and designed to replace daily injections through 20, 30, or 40-unit increments. You may remember, too, that this the pump our own Wil Dubois did a fun science experiment on last year. Wanting to tap its market of potential users in the type 2 community, Valeritas invited a group of friends from the DOC.

The company wisely decided it wanted to reach out not only to clinicians about its new product, but directly to patients for "real-world feedback" and to find ways to better address patients' concerns and needs.

So this Wednesday (as in tomorrow), the company is flying in a small group of T2 PWDs who are active online to its manufacturing and R&D plants in Shrewsbury, MA. Those expected to attend include D-Bloggers and advocates Kate Cornell of Diabetes Daily and Sweet Success, Jan Chait of Diabetes Self-Management, Mike Durbin at My Diabetic Heart, Bea Dominguez at Cranky Pancreas, Bennet Dunlap from YDMV, and Dr. Phyllisa Smith Deroze from Black Diabetic Info.

We'll be following along on Twitter, keeping tabs on the discussion through the hashtag being used, #T2DSummit. You can, too!

The company has two key goals, says V-Go Brand Director Breffni Fox:

  • "One is to introduce ourselves to this targeted group within the DOC. We are currently focusing on the Type 2 space in our marketing, and our social media research shows this is an area of opportunity, as much of the diabetes community is Type 1-focused."
  • "Our other goal is to understand this dynamic and to try to identify ways that this group can help to encourage additional participation in the Type 2 community online. Fellow D-Advocate and type 1 PWD Kelly Close of diaTribe and consulting business Close Concerns will be leading a roundtable discussion that focuses on ways the Type 2 Community online can grow stronger."

In deciding to hold a summit of its own, Valeritas looked at what other companies were already doing on this front. And Fox says Valeritas specifically read our coverage and observations about the community's evolution here at the 'Mine.

"Those (posts) certainly played a part in how we've approached this, but we really felt we wanted this one to be tightly focused on Type 2 and, as far as we can tell, that hasn't been done yet," Fox says. "While we certainly value the leadership and insights of the folks who have attended many of these other summits, our goal is to be as specific as possible in our focus and not just have another summit for the sake of a summit."

Fox says the timing of this summit, happening two days before the American Diabetes Association's Scientific Sessions officially begin, is just coincidental. They have no key announcements planned at the ADA conference, though there will be some new data relating to the V-Go, but none of that factored into the summit timing decisions.

"It is our hope that we can carry this conversation from the small group at the summit on to the larger community and keep the momentum moving forward," Fox says.

First Kid on the Block

Meanwhile, Roche has opted to not have a summit this year, the first time since 2009 that the Indianapolis-based company won't be hosting this sort of event. Those of us attending the 2012 summit got the sense that the end was near.

The paradox was that while Roche's goal from the start was to be inclusive, over time, feedback from both attendees and others not invited from the DOC was that this event seemed to be exclusive, almost "like a party only the cool kids were invited to."

The company says it is now pursuing a strategy that offers "touch-points that can include more people."

Of course, we've also seen the headlines about the rocky road Roche has been traveling lately, with cutbacks aRoche-Headquartersnd restructuring, talks of selling off its blood glucose division, and just overall anxiety about the coming health care reform changes. We have to wonder if all that, and budget considerations, factored in. Roche downplayed the significance.

Rob Müller, associate marketing manager for Roche Diabetes Care, explained it this way:

"We came up with the idea first and foremost from an inclusion aspect — thinking about how we could move forward getting more people involved. There is something very powerful about face to face meetings as we've seen with the summits, so it will be good to include as many as possible as we hope to have more of these meetups in the future."

Instead of a summit for 2013, Roche Diabetes Care has decided to hold two "meet-ups" featuring DSMA Live -- one at the American Diabetes Association's Scientific Sessions in Chicago starting late this week, and one at the American Association of Diabetes Educators annual meeting in Philadelphia in August.

At the ADA conference (which both Amy and I will be attending and covering), the first Roche meet-up will take place from 7-10 p.m. Central Time on Monday, June 24. This will be held in the Addison conference room at the Chicago Downtown Marriott Miracle Mile, and the meet-up will feature an on-site broadcast of DSMA Live between 8-9 p.m. Specifically, the D-Community can attend in person, interact online, or as always, can call into the online radio show.

The topic: What we're seeing at this big D-conference and how we think it impacts the community.

For AADE, Roche Diabetes Care would also like to include two satellite locations during the DSMA Live broadcast. These locations would be in two different cities, and would offer the chance for even more people to be included and participate. If you have suggestions for the satellite locations, Roche would love to hear from you. Expect more information concerning date and time for the AADE event in the following weeks.

Around the Block... Headed Where?

Many other diabetes companies and organizations have begun engaging with the patient community, too. At the upcoming ADA conference, a handful of companies have invited DOC members out to interact, such as a DOC dinner hosted by Johnson & Johnson, and another by Tandem Diabetes. Among the big guys, only Medtronic is left with questions about whether it will again hold a summit as it did in 2012 and 2011. The company couldn't provide any details on that by press time.

Overall, we asked for this kind of interaction and it now it's time to reflect on "watch out what you wish for."

Whether they host "summits" or large get-togethers or just impromptu one-on-one coffee shop meetups, it's important that diabetes companies and the pharma industry listen to our voices, right? We want them to take our perspectives into consideration in how they make decisions.

Ask, and you shall receive. Now, it's about deciding what to do with the attention we're getting and ensuring that it provides value to us, the patient community, and not just to the vendors who are looking to optimize their marketing. Valeritas is paving the way in reaching out to type 2s -- and we hope this will help strengthen the patient voices from the T2 world, the bulk of diabetics in this country, who have yet to engage with pharma as closely as they could and should.

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.