As you've probably read by now, Roche Diabetes was brave enough to host a 'Social Media Summit' for the second year in a row last week, inviting a group of diabetes bloggers and online advocates to commune and interact. Yes, this was an all-expenses-paid trip to Orlando, FL, for those who attended, but by no means a marketing spiel. In fact, I was delighted that representatives from the American Diabetes Association (ADA) and the American Association of Diabetes Educators (AADE) agreed to attend in order to "confront" our group.

Honestly, I felt like we were making history here: a group of ePatient bloggers for the first time confronting a huge, powerful, and monolithic national advocacy organization that supposedly represents them — with plenty of gripes around where diabetes care and awareness campaigns are going in this country, and what we believe the ADA is doing wrong.

The ADA's Senior VP of Marketing Communications Lois Witkop was among the six-person team that attended this pivotal discussion. I asked her to pen a post on her 'takeaways' from the event.  Please read:

Innovation 2015

A Guest Post by Lois Witkop, American Diabetes Association

Just over a week ago in Orlando, a number of my colleagues and I represented the American Diabetes Association in a much-anticipated conversation with the diabetes e-community (or D-OC) at the Roche Social Media Summit.  It was only 75 minutes, but it was quite meaningful and valuable to us.  When we were invited by Roche to participate (thanks to Lisa Huse and her team for the opportunity) it was not lost on any of us how unique this opportunity was.

We had two objectives going into the Summit — one was to bring people to the table who represented the many dimensions of the Association, and could put a face on the organization that the e-community could connect with and relate to.  Amy Johnson, our National Youth Advocate, and Dwight Holing, a member of our national Board of Directors and our Secretary/Treasurer-elect, represented our volunteer constituency.  As staff representatives, I was joined by Dr. David Kendall, Chief Scientific and Medical Officer, and Dayle Kern and Christine Feheley from our Communications team.

Our second objective was simply to listen.  We hoped the feedback would be constructive, and for the most part it was.  Not unexpectedly there were some pointed critiques and some airing of personal grievances as well.   We know the reputation of any organization — our brand — is built one interaction at a time, and we heard clearly that many individuals in the room had experiences with the Association that were less than positive.  And while we may not have answered each individual comment, we were definitely listening, and will use the feedback to help us get better at what we do — serve people with, and affected by, diabetes.

The main sentiment that we took away from the Summit is that the American Diabetes Association is perceived as being disconnected from our patient constituency.  It's a tough thing to hear, and while I could fill pages with all of the things we do for and on behalf of people with diabetes, the perception exists for a reason.  In some instances we aren't doing enough, and in others, we simply aren't promoting what we do.  In both instances we need to do better, and we know it.

I hope that by attending - by listening - we were able to demonstrate that we are evolving as an organization.  We will never be perfect but, driven by the passion and commitment of our volunteers, we will be diligent in our efforts on behalf of the people we serve.  To continue to do better for and by the diabetes community, we will depend upon the ongoing feedback and support of our constituents — both consumers and professionals.  I truly hope that our time in Orlando was just the beginning of a dialogue and collaboration that can help strengthen all of our collective efforts, improve lives, and achieve our ultimate goal - to Stop Diabetes.

— Lois Witkop,

American Diabetes Association

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I've personally been quite critical of ADA in the years since my diagnosis. I feel that the organization is very "red tape," and in particular, VERY disconnected from adults with Type 1 diabetes. But I must say, this open conversation at the Summit gives me hope that the ADA is/ can/ will be "plugging in" more closely to the perspective of us "on-the-street" PWDs in the near future. Thank you, Lois!

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