The Final Word on #ADA2012 from Diabetes Blogger Kelly Kunik
Kelly offers some final thoughts on the ADA 72nd Scientific Sessions in Philadelphia.
First, I want to say a big thank you to Roche for going out on a limb and handing over their twitter account to a Diabetes Blogger attending the American Diabetes Association's 72nd Annual Scientific Sessions. Because of them, I not only had the opportunity to tweet and vlog about sessions, I got to actually attend, and I'm so glad I did! And the fact that they trusted me (crazy, I know) enough to post vlogs and send no-holds-barred tweets from their twitter account was both awesome and very much appreciated.
I found the Philadelphia Convention Center itself to be a ginormous, confusing and a low-blood-sugar inducing, multi-level maze of all things diabetes. (FYI: according to various scientific minds—and some not so scientific minds—who kept asking yours truly for directions to various sessions, I wasn't the only one who felt directionally challenged and/or confused).
On the other hand, I found the conference lectures, oral presentations, poster-hall sessions, presenters and convention floor to be filled with all sorts of the latest and greatest diabetes knowledge, and I learned so much.
Hopefully I was able to pass along some of what I learned to you all via twitter. Transcribing what was being said into understandable tweets presented its own set of challenges, but from the feedback we received, I think we accomplished our goal of doing that!
Unfortunately, all this wonderful patient-centered information was not actually available to patients en masse because very few people with diabetes had the opportunity to attend.
Between the attendance fees and other expenses of going to a multi-day event, the very people whose lives are directly affected by what was being said at the conference weren't there. And their voices weren't represented or engaged, which added to a very real and unfortunate gap that needs to be filled.
While clinical trials, closed-loop sessions, talks about gestational diabetes and diabetes and depression, etc. were informative and interesting, I found it highly ironic (especially during presentations about diabetes and depression) that the voices of the very people they were talking about, and who would benefit most from those sessions, were neither able to attend to hear what was being discussed, nor actively participate in the discussion.
One of the main takeaways from the conference for me was this: If healthcare professionals want to better engage with the patient and develop better communication skills with the patient, let the patients actually attend ADA! Sell day passes for those interested in attending different lectures and let them participate in their disease. If you do that, we all walk away with a better understanding of one another.
I know there are so many others who would love to attend and be willing to pay for a day pass that could never afford the full five-day attendee fee.
Social Media makes the world a smaller place, which can be both a good and bad thing. In this case, I believe strongly that patient engagement in healthcare via social media is indeed a wonderful thing: Because of Social Media, I was able to find the diabetes on-line community, which helped me find my voice and become stronger. Because of Social Media, I was able to attend ADA and report back to you via Twitter, Facebook and vlog posts. And because of Social Media, patients, clinicians and pharma companies have the opportunity to engage with one another on a daily basis. In other words, people with diabetes get to see how hard the researchers work on their behalf, and what roadblocks they encounter.
On the flip-side, healthcare professionals have the opportunity to hear actual patient voices talking about the experience of living with diabetes 24/7/365, with no time off for vacations or good behavior. And because they get to hear our voices, we become more than just a patient number in a study. We become very real people to them - and that, my friend, is HUGE.
So how does pharma fit in? Well, in real time, pharma gets to hear what patients like, don't like and what we need them to do better. Again - that's HUGE.
People with diabetes do the great majority of the day-to-day care and treatment of their disease, so having access to events like ADA is critical. Diabetes is a technology-based disease, and we need access to studies about its treatment.
Patients, clinicians and pharma have to work together in order for those of us living diabetes to live better and healthier lives, so this experiment that I did with Roche was a good first step. Hopefully, we can continue on the road of true patient engagement and get the information out to the very people who would benefit from it the most—people with diabetes!
Ed. — Once again, we would like to thank Kelly for her tireless and excellent work at this year's sessions. Follow her at her blog, Diabetesaliciousness, and let her know you appreciate it too! - Rob