Moments of Wonderful

…rather than a lifetime of nothing special. A diabetes blog.

Moments of Wonderful - …rather than a lifetime of nothing special. A diabetes blog.

What are we doing here – Roche Summit part 2

As I mentioned in my previous post, Roche invited representatives from the American Diabetes Association and the American Association of Diabetes Educatorsto the summit to continue the dialogue between “us and them” and how we can most effectively communicate with each other and help each other in the social media arena.

Scott Strumello was charged with the difficult task of moderating our discussions. He introduced the time by bringing up several of the main issues that he knew we would want to discuss. Those issues included confusion over the goals and objectives of the organization, concerns about transparency especially in regard to finances, and the ‘elephant in the room’ – the fact that eradicating diabetes would put the ADA out of business (really, how much do they want a cure?)

 

After the introduction, I would say the ‘floor was open’. With thirty or so people in the room, there were plenty of opinions to go around. No matter how outgoing or shy you are, I would say you don’t get involved in social media if you don’t have anything to say.

bad picture of the ADA reps and the firing squad
It was a little difficult to take notes because the conversation was moving so quickly but I tried to capture some of the key points and concerns raised by the participants.
  • Scott Strumello wanted to know where the money is going – 25% of money raised at ADA goes to research compared to 85% at JDRF.
  • Amy from Diabetes Mine questioned the ‘face’ of the organization. Considering the lack of usability of the website – is it for patients or for doctors?
  • Chris Bishop was the first to bring up the concern that is all over the online community – what is the ADA doing for the Type 1 adults?
  • Kelly Kunik pointed out that not only have the Type 1s grown up but that means that we are also financially independent. We will support organizations ($$) that support us.
  • Manny questioned where the ADA was on WDD. (which led to my comment that was retweeted several times – “I hate the type 1/type 2 fight. No other disease fights with itself.”)
  • There were several concerns regarding the ADA Expo. Christel was frustrated that the only way she heard about the Expo in her town was through a pre-recorded message. If they have our phone numbers, they have our e-mail addresses (and physical addresses). Reach out in the ways that people will actually listen. Cherise attended an ADA Expo and was disturbed to see an abundance of gastric bypass booths and people trying to sell their cookbooks. As Cherise said, “It’s not about the quick fix, it’s about education.”
  • Kelly Close wondered where the doctors were at the recent ADA session. David was frustrated that he could not get a press pass to report on the event for Diabetes Daily. If you really want to reach out to social media, you have to provide the means for us to take part. Ginger tried to contact someone at Diabetes Forecast and got the run-around. Bennet asked who we should reach out to in order to have a better relationship with the ADA as social media members – the answer is Dayle 🙂
  • Due to insurance reimbursement, endocrinologists are losing money treating us, so new doctors are not joining the field. Christel wondered if the ADA could offer scholarships for doctors willing to pursue endocrinology (who would commit to at least a few years in the field)
  • Leeann pointed out the importance of addressing the psycho-social aspects of diabetes care because without that “the diabetes education won’t stick”. She urged the representatives from the ADA to provide additional support for diabetes mental health services.

And that is when things got crazy. The ADA representatives left the room and were replaced with two representatives from the American Association of Diabetes Educators. Again, Scott Strumello was charged with the task of moderating the discussion. Unfortunately, after warming up on the ADA, the group seemed primed for an “attack” on the AADE. The primary representative did not even finish explaining her job and the goals and objectives of the organization before the group started speaking their minds.

George in Manny's hat
Let me back up and explain a little to put it all in context. The American Association of Diabetes Educators is an organization designed to support health care professionals as they provide education and support for people with diabetes. It is not the organization that determines the rules and regulations to become a Certified Diabetes Educator (CDE); instead they provide the support necessary to help their members with the certification process.
We only had about 45 minutes each with the ADA and the AADE. Instead of spending that time discussing how the voices of people with diabetes within social media can help the health care professionals represented by the AADE, we spent most of the time arguing with the representatives from the AADE about the unfairness of the certification requirements.
The only problem, as I mentioned above, is that the AADE doesn’t set the requirements and has little to no input into the process that would have to take place to change them. Many people in the room would like to be CDEs (something I have considered for myself), so it was a hot issue for the group. I would have liked to have been a
part of a discussion with the AADE about how we could best help each other but that is not what happened. When someone attacks, I think the two basic reactions are either to attack back or to put up a wall. The representative from the AADE definitely put up a wall – it was all over her body language (my table started counting her shoulder shrugs).
Hopefully in the future the discussion can head in a more profitable direction. George and I were brainstorming on the plane to California, and we talked about a mutually beneficial relationship. I attend conferences and connect with other people across the country in my field, and I always leave with new, exciting, and better ways to do my job. I am sure health care professionals, such as CDEs, want to be better at what they do, and we want better health care professionals. If we could connect them to the voices of people with diabetes in the online community, and help them connect their clients to those voices as well, I think everyone will be better served.
who didn't wear Manny's hat?

 

I forgot to mention in my previous post, but I should disclose that Roche paid most of the expenses of my trip to Orlando. I was provided with a hotel room and food during the summit, and will be reimbursed for mileage. They didn’t pay for my rental car, but that’s a whole ‘nother story. They did not tell us we had to mention the summit on our blogs, podcasts, or message boards – but I’m guessing they though we probably would!
  • deanusa says:

    thanks sara.

    hmmm.. im at a loss. where there any answers to the questions?

    im really not sure what is being accomplished with the roche summits. i know george mentioned some things about the meters and real people but ….

    seriously after a year that was all?and i love you all that blog and i do not expect you to do this everyday. but its very hard for the rest of us to get a picture of what happens there. the info is so spread out. sorry but im starting to be suspicious of this whole thing(roche)i hope im not being out of line but just what the hell is the motive? this is a great pr move on their part.they are talked about in the d world with really having to do nothing. honestly you all are a cheap weekend!!

    where are we headed again?blogged about a couple of days before hand,while you are there,and a couple more after its over.

    then again next year when it comes up again?

    was anyone in touch during the year?was anyone told “hey we are changing the numbers on the meter pictures”? is anyone being phoned-emailed and asked for their input or to be put in touch with a real d?

    its diabetes not brain surgery.if they were really involved in the d word all they would have to do is spend some time each day reading.

    lol im not directing this at you personally sara!!

    July 5, 2010 at 8:31 pm
  • Sara says:

    Thanks for your feedback Dean. I don’t take any of it personally and am happy to provide answers to any questions you have (the ones I have answers to at least).

    I was not invited to the Summit last year, so I have no information about how much follow-up there was after that meeting. My first contact with the group was a few months ago when I was invited to this session.

    I can tell you that the representatives from Roche (at least) certainly do spend time reading our blogs because they knew about things we had written in old posts.

    Here is why I think we are there: Many, many years ago (long before the first meter was on the market) companies put ads in the paper to sell their products (whatever they were). Then radio came along and we started to get commercials. Finally, television was invented along with a whole new type of commercial. All that is old news now. If a company wants to stay ahead of its competitors it has to be on the edge of media. And right now, that is social media (facebook, twitter, blogs, message boards, etc). Roche invited the people they invited because they wanted to see how we communicate within social media and how they can do it better themselves.

    As for what happens from here, that remains to be seen!

    July 5, 2010 at 9:19 pm
  • deanusa says:

    thank you.

    i know i have discussed this with a few of you scott george chris and a few others.im not sure if what you said was mentioned!?

    social media.that puts a different spin on it.because of the fact its news we can interact with.

    i have a “version/vision” on where i would like to see them go.its time to get out of the “kiddie pool” and jump into the deep end for them.im sure they can set up a web site to interact with d s.money has been thrown away on lesser things.there are 365 days in the year,what are they doing with the other 363?its 2010 throw caution to the wind.get involved if they are serious.

    lol i fear this.this will keep happening and the d community will ignore them.they pull “our” bloggers in and nothing happens.they will be in the same category as the “cures”.

    im not being hard i hope but this is something that gets me pumped up!!i like the idea.it has potential and could change things.

    thanks for your patience sara.

    July 6, 2010 at 10:07 am
  • Windy says:

    Thanks for the info Sara! On a positive note, I do feel like heads ARE being turned slowly and eyes are being opened to educating others about diabetes (and the different types) through the many facets of media. Thanks for advocating!!!

    July 6, 2010 at 7:18 pm
  • Frank the Lege says:

    I think it would be a fair rule of thumb that any pharmaceutical company that spends money on a summit have interests that are probably for the most part not in line with our interests as diabetics or indeed of the general public.

    I would suggest that the trick is to use these events to promote the view of T1 and T2 diabetics and their concerns.

    It’d difficult to tell from these blogs if that was successfully accomplished.

    I can’t help feeling that the ADA were let off the hook. I didn’t see any criticism in this blog of ADA’s high carb diet recommendations.

    July 10, 2010 at 5:02 am
  • Frank the Lege says:

    Sorry I made an omission.

    Should read “I didn’t see reported in this blog any criticisms of ADA’s high carb diet recommendations”

    and not

    “I didn’t see any criticism in this blog of ADA’s high carb diet recommendations.”

    July 10, 2010 at 5:09 am

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