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:
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
****
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!
Thanks Amy for this useful note from Lois. I found the meeting with the ADA folks was a very valuable part of our day at the Roche d-blogger summit. I hope that both sides (d-bloggers and ADA) will continue to work together.
I appreciate your publishing this note from Lois, and I am hopeful that this is, in the ADA’s words, a first step, but like many PWD’s, I think that will only be proven with time. Over the years, I have seen many organizations give a good presentation or appear to be getting it, only to see them revert back to their well-established ways shortly after what appeared to be a moment of progress. Having said that, I believe that some important contacts have been established, and if the organization is serious, we can expect to see an ongoing dialog with them!
Thanks, Lois!
We hope so too, sincerely.
Thanks for posting this Amy.
Thank you for hosting this guest post, Amy.
Lois, I hope the ADA is indeed sincere in the desire to improve its image with diabetes patients.
I seriously have gotten a sour taste in my mouth when anyone mentions the ADA, which is unfortunate. But I know there are people in the organization who really do want to help, despite the fact that as a whole they seem disconnected, especially from the t1 community.
I always donate part of the proceeds from my books to a diabetes charity (JDRF for the first book, DRI for the second), and was polling people on who the money should go to for book 3. Nobody mentioned ADA–In fact a couple of people told me they’d recommend anybody EXCEPT FOR the ADA. People only have a limited amount of money to donate for diabetes, and as patients I think we want most of that money going towards research. I really see almost none of the ADA funding going towards the things we care most about at this point, but I hope the conversation last week has got them thinking…(I’m somewhat doubtful, but I do still hope…)
I love the comments that she is making here and it all sounds wonderful. Let’s hope that they actually act upon these things and start getting things done and turn around the reputation of their organization. Staying more in touch with the community is the best way for this to happen I believe.
I would agree that Lois’s comments are headed in the right direction, but ADA has some serious work to do to improve. ADA promotes a lot of wrong information about adult-onset Type 1 diabetes, and the outcome of their misinformation campaign is that people with adult onset autoimmune diabetes typically get misdiagnosed as having Type 2 diabetes, a completely different disease. I have had people from ADA, recently, tell me that it didn’t matter if a person with Type 1 was treated as if he/she had Type 2. Also, that adult onset Type 1 is rare (when it is more common than childhood onset Type 1). ADA has a lot of work to do to actually be an advocate organization for Type 1s, as oppposed to doing them harm.
Lois’s comments are good, and I hope that ADA truly is willing to listen to constructive criticism. I would go further than Amy’s comment that ADA is very disconnected from adults with Type 1 diabetes–I would say that ADA works against and harms adults with Type 1. ADA says that adult onset Type 1 is “rare” when in fact it is more common than childhood onset Type 1. ADA includes those with LADA (latent autoimmune diabetes in adults, or adult-onset Type 1) in statistics for Type 2 diabetes. Recently, someone from ADA told me that it is acceptable for a person with adult-onset Type 1 to be treated as if they had Type 2 diabetes (which is an altogether different disease). All this wrong information promoted by ADA means that people like Amy and me (those of us with adult-onset Type 1) are routinely misdiagnosed as having Type 2 diabetes and given incorrect treatment.
Amy, Thanks for getting the view from the other side. While actions always speak louder than words, this is a step in the right direction, whether a giant step – only time will tell.
[...] Diabetes Mine: Quick Brief: Roche Social Media Summit and What the ADA Learned from the Diabetes Social Media Summit [...]
Good to read the response from the other side, as the above poster mentioned. Any chance that the AADE will respond as well, or was that interaction so much of a disconnect that a response wouldn’t be valid? (Have read how it wasn’t productive in several blog posts).
Thank you so much for that post, Amy! And Lois, for the feedback on the ADA side! It was truly great hearing what the ADA had to say and how willing they were to listen and recognize some areas where they weren’t up to par. One of the things that was the most interesting to me was how the ADA and JDRF are really having a more active and continued dialogue than in the past, and that’ s encouraging to me. Hope the dialogue and listening continues from both the ADA and our patient community as time goes on!
[...] » What the ADA Learned from the Diabetes Social Media Summit … [...]
[...] The ADA and AADE sessions were productive in my opinion. Scott Strumello moderated the conversation and brought some general concerns of the DOC and to the table and I thought he did a fantastic job. The ADA listened and wrote down everything we said. One of the representatives posted a great review on what the ADA took from the session at DiabetesMine. [...]
I am an adult with type 1 who also feels very little connection to ADA. The slogan “Stop Diabetes” is a good example of why I feel disconnected. I guess I focus on “Managing Diabetes”. I guess that the point is to focus on a cure, which of course we would all like, but somehow to me “Stop Diabetes” makes it sound like it is already curable or preventable, which I do not believe to be true, especially for type 1.
One thing that I do appreciate about ADA is the legal representation and advice that they provide for people with diabetes.
I hope that through increased communication, the organization will move closer to patients.
Hi Amy,
I realize that you have spoken and written about the failure to address the adult type 1′s. Children are cute, however, it is a challenge to manage our condition and live a productive life. Point of fact, Lilly and Joslin have award recognitions for 25 and 50 year life markers. Both have recently added a 75 year award. This group is the true poster people for the ADA. Hope you live to receive a 75 year award! …. PS Do you have a “copy” of your original diagnosis to submit?
It is the sharing, caring, research and always attempting to do a better job and have the best numbers possible which helps all of us.
Dan
[...] tendrich reflects on the lessons learned by the [...]
The discussion at the summit was my second recent interaction with the ADA (the first was my Red Rider experience for the Tour de Cure).
Both of these recent interactions have been positive for me, and it is helping me open my mind a bit more to the ADA as a whole.
Time will tell where things go from here, but I’m going to try my best to stay positive, offer constructive feedback where appropriate, and be open to helping them become the organization we would like them to be.