Friday, June 19, 2015

The Social Media Side of the ADA Scientific Sessions

[I Am] an Advocate
photo courtesy of DHF
I have to say, I was was impressed with the social media aspect of the ADA Scientific Sessions.  There apparently was a constant stream of events, I attended a few and I'll talk about them.  I also had a chance to meet some people face to face who I had never met before and that was wonderful.  And then the highlight for me was the Happy Hour event put on by the Diabetes Hands Foundation (DHF).  We got to hear my new friend and comedian Chelcie Rice and I had lots of opportunity to meet people and in particular the supporters of DHF.  And the best part was that there an auction of three paintings by Manny Hernandez's very talented wife Andreina Davila and I got to take home the painting on the left.  The vast majority of people from the Diabetes Online Community (DOC) that attended were Type 1.  There were only a few people with Type 2, but fortunately I had the opportunity to meet David Mendosa and Gretchen Becker both whose writings had an important influence on my diabetic career.

75th ADA App
I attended three major social media events at the ADA, I'll talk about each of them in a minute.  Before I get into my experience with meeting people (particularly patients) from the DOC let me say a few words about social media that I saw at the ADA.  First, let me say that social media is a bit like the wild west, all kind of things are happening and it is truly wild and just a bit out of control.  We sometimes think of social media and the DOC simply from the patient perspective but really the DOC also includes other players like doctors, educators, industry and government.  They are all out there as well, tweeting and doing other stuff.  And the ADA itself is all over social media, it even plays a big role in the ADA news coverage of the sessions.  The ADA even has an app which is connected to twitter so you could follow everything.  And by the wild west I mean that a great deal of this social media stuff is not controlled and regulated like other areas of communication (such as advertising industry to doctors or industry to patients).  In fact the FDA only issues in January 2014 a first loosey goosey draft guidance on social media.

So it turns out that although I only went to three events there were a bunch more, many which were hosted by industry (Medtronic, Johnson & Johnson, Sanofi, Eil Lilly, and Novo Nordisk) but didn't attend them.  I actually didn't seek out all those events and in many cases I wasn't necessarily privy to them.  And frankly I got tired and I also wanted to visit my daughter some time while I was in Boston.  And perhaps having T2 and my background leads me to be a little cautious about interactions with industry.  I do think it is probably true that the T1 community has been able to establish a close alliance with industry because their goals are pretty closely aligned.  I'm not sure you can say the same thing about the T2 community.  It is clear that some of these companies spend significant resources and effort cultivating and "detailing" with the T1 patient community through social media.  But it is not clear that companies have any clue on how to do that with the T2 community.  I suspect that they just don't know how to deal with the few T2s who are active, many who raise concerns about evidence, safety, honesty, transparency and corruption.

And one should be very clear that diabetes drug and medical device companies see the DOC and social media as vital to their marketing success, after all diabetes is a chronic condition and it is the patients that drive many of the decisions.  And so it is perhaps no surprise to see such vigorous social media efforts by industry.  In fact the majority of the top 10 pharmaceutical companies in social media are major diabetes players.   And this is very much evident in T1, where it is patient choice that drives pump, CGM and insulin decisions.  Not so much in T2. 

Ryan Reed's Helmet which
he Did Not Wear That Night
So that being said, I did have some opportunity to go to three events as well as meeting a variety of people in the press room and the corridors of the huge complex that called the BCEC.  The first event was a DOC blogger reception hosted by ADA on Friday evening.  I saw lots of people from the DOC such as Scott Johnson, Kelly Rawlings, Hope Warshaw and even Ryan Reed.  And of course Mike Lawson, Corinna Cornejo and Melissa Lee of DHF were there. There were many others (sorry if I didn't mention you) at the reception and it was very kind of the ADA to host this event.  It was really patient oriented, there were representatives of the ADA there of course but it was very patient focused.  Obviously I think the ADA sees the DOC as an important element of the work they do but I actually struggled a bit with trying to figure out what it is that the ADA hopes that bloggers will bring back to their readers.  The ADA very kindly gave me media access to the sessions and that clearly made a big difference in my ability to get in and see things.  But I think the ADA and the bloggers are probably still trying to figure out what this interaction is all about.

The ADA DOC blogger reception was just an hour so of course I had to make my way over to the next event which was the 4th Annual ADA 2015 DOC Tweetup.  Although I don't actually tweet I was welcomed anyway.  This event was held at M.J. O'Connor's an Irish Pub at the Westin right adjacent to the BCEC.  It was hosted by Edelman a company that specializes in PR and in social media in particular.  Many of the people that were at the ADA blogger reception made their way over but other people joined us.  I had a chance to talk with David Edelman the founder of DiabetesDaily (apparently no relation to the PR firm).   David has a new book "Thriving with Diabetes" (and David you said you would sign a copy for me, don't forget).  Later Manny Hernandez showed up so we had a great time catching up.  Edelman put on a great spread, there were a ton of very good cheeses and some very good sliders.  As might be expected a number of people followed low carb diets but overall the food was great.

Sometimes eating at the ADA during the day can be hit or miss.  There are a few places in the BCEC, but with 14,000 people you can imagine the lines.  There are lots of restaurants in the area and even a special trolley to take you around, but lunch can then turn into a three hour event really breaking up the day.  And so some of the food at these events turns out to be a major source of nutrition for some of us.

Before I get to the last event I'd like to also note that I had a chance to finally David Mendosa and Gretchen Becker in the press room where we were able to share our stories and talk about type 2 diabetes.  We really hit it off and I came away from meeting both of them feeling like I had met long-lost friends.  Together we agreed to start an ongoing dialog to figure out how to help the T2 community.  Both David and Gretchen are long and very contributors at HealthCentral, but in the end simply having information available doesn't mean that people use it and are helped.  So we spent some time talking about the issues and Bennet Dunlap also crashed and agreed to help.  I hope that we are able to figure out some things to really help people with T2.

Melissa, Mike, Myself
and TuDiabetes own Clare
So on Saturday the big evening event was the Diabetes Hands Foundation (DHF) Happy Hour.   This annual cocktail and networking event took place at the Mortons the Steakhouse in Seaport.  It was a close walk from the BCEC.  I have to say, my memories of the area go back more than 30 years and it has changed a lot.  It used to be a pretty rough area but it is now all upscale and called "Seaport Boston."  There was a big crowd at Happy Hour and a big crush at the beginning.  There is a lot of logistics involved with the even and I know that all the DHF staff worked extra hard on it and at times things were quite stressful.  This event was attended by major supporters of DHF, key representatives of the organizations like the ADA, AADE, TCOYD and others.  There was a contingent from diaTribe, DiabetesMine as well as lots of others representing the DOC and the network of charities that work on diabetes issues.

Chelcie Rice the
Evenings Entertainment
Melissa did a great job.  She was fortunate that her husband was able to attend and I had a great time talking with him.  We don't always appreciate how difficult the job is that Melissa took on.  She had to step into Manny's shoes taking over something he "trained" to do over like 8 years and on top of that deal with moving TuDiabetes and EsTudiabetes to an entirely new platform.  Meeting Melissa's was really good because I know that he has stepped in to help on the migration and this cause has become more than just Melissa's advocacy but really a family effort.  The entertainment for the evening was Chelcie Rice, a comedian specializing in diabetes.  And he was a riot.  Those of us with diabetes truly have to put up with a lot of bad things in our life, but if you can truly laugh at yourself and your own misadventures then life is a lot more bearable.  Chelcie also has a website with a blog.  Chelcie told me that living in the south with diabetes can be a challenge, so many people with diabetes just don't pay attention to the their condition and don't feel empowered to do anything about it.  That is a shame.  I had a great time talking with Chelcie and encouraged him to write more.

The Three Paintings and Their Subjects
photo courtesy of DHF
Of course Manny was there.  He looked really relaxed and I think he felt really at home.  I think it he felt a lot of conflict moving on to his new job but I do hope after the Happy Hour he feels like DHF continues on a strong course.  And obviously the highlight for me was the auction.  Three paintings by Andreina Davilla were auctioned off.

These paintings were a "collaborative study of egos and identity labels" that she titled "[I AM]."  You can read more about the paintings here.  I was very fortunate to win the painting of Manny entitled "[I AM] an Advocate." I really did not anticipate walking out this painting.  I'm really proud to own this painting.  Manny, DHF and all the TuDiabetes community has meant a lot to me.  So in summary I'll give you one last look at the painting.  If you want to see it again you will have visit me so you can see it on my wall.

[I Am] an Advocate
photo courtesy of DHF

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