Too many medical professionals are disconnected from us people with diabetes (PWDs) and they're missing the point on how to help us manage our diabetes. Yet, they are passionate and so want to reach us.
That's my main takeaway from the American Diabetes Association's 72nd Scientific Sessions, as a newbie attending this mass diabetes conference for the very first time.
Rookie observations are what you'll find here, now that I've had a chance to stop sprinting around downtown Philly — a place that seemed like the hub of the diabetes universe for five days, where circa 17,000 professionals converged (60% from outside the U.S.) to talk diabetes.
This conference showed me I really need to brush up on my diabetes science lingo, rather than relying only on my 28 years of experience of living with type 1. You know, the insider baseball stuff that gets lost in translation between these conferences and the offices where we go to visit our docs. These doctor-to-doctor and research-heavy mass meetups are full of stats and conceptual scientific mumbo jumbo, and it's never been aimed at the patient to get as much out of it as the professionals. This is just the nature of the conference.
But as a patient-blogger, I did manage to find some gold nuggets and interesting tidbits scattered throughout the sessions. And individually, many of the speakers seemed very excited and brilliant about whatever the topic might have been.
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Being a non-science-type, it seemed to me that the most dynamic aspects of the entire conference happened in the evenings and outside the convention center meeting rooms, where brilliant minds came together to actually discuss issues that really resonated with me on the patient-level. Abbott, Taking Care of Your Diabetes and the Helmsley Charitable Trust and T1DExchange were some of the forums I checked out, witnessing great discussions about how progress in science, technology, patient care, and the development of the D-community are making real changes for patients living with this thing.
The rest of the "official business" during the day? Kinda boring in the context of my average PWD eyes.
The Missing Point
My observation in attending a dozen or so sessions is that many of the questions researchers seem to believe are unanswered or need more study come down to a simple point: we PWDs aren't stats, slides or textbook scenarios. We are people, with lives that are complicated by many more things than just diabetes.
As inspiring as it was to see the mind-power and passion of thousands of people working on diabetes, my heart was a bit sad that it didn't feel like the medical community is connecting the dots — even some very obvious dots.
I heard multiple times: Peer support seems to help, but we don't know why and need to study that more. Online resources appear to help, but the "quantifiable evidence" doesn't tell the docs why and so they only scratch the surface (I suppose many never heard of the supportive DOC or are threatened by its lack of physician involvement?!).
A quote from Dr. Kevin Volpp, in a talk on how to motivate PWDs to change their behaviors, sums it up for me: "We need a more effective way of hovering over patients that will be well-received." He wondered if health care social media could be a way, but left it at that.
To me, it was like watching my favorite baseball player hit the ball and seeing it soar into the outfield toward the wall, only to have it fall short and stay inside the ballpark. What a letdown!
(OMG, isn't it OBVIOUS why peer support helps? Apparently not, to people who've never had to struggle with BG control, day-in and day-out)
Another obvious point: please don't hover over me! Unless you want to be kicked, or you're auditioning to be my butler. Instead, try talking and listening to me. And not being threatened when I don't agree with you or question the wisdom of your medical guidance. Know that often talking to my PWD friends who "get it" can be just as powerful, if not more, than anything you might tell me.
Others talked about the wonders of the Internet being a way to reach patients, and the need for peer support, but no one seemed to recognize (at least in the sessions) that you can connect the two without the doctor and that has so much potential to change behaviors and help PWDs on every level (!)
Cynicism aside, though, what shines through that disconnect is the passion packed into every corner of the conference, a desire to help PWDs that radiates into clinic's offices throughout the U.S. and world. That can't be ignored. Maybe they're missing the point in presentation, and not really understanding how to bring this home to us, but every single person I encountered seemed passionate and caring. I do believe they're in this for us, and they're making a difference.
Translating Good Intentions?
Some presentations and talks I attended were outstanding. Just a sampling of those I saw talk throughout the sessions include: Bill Polonsky in San Diego, Bruce Bode in Atlanta, Korey Hood in San Francisco, Lori Laffel in Boston, and Julio Rosenstock in Dallas. There are probably many more who really know diabetes. Some of them live with it, so they know it's complicated and so many psychosocial issues play into every aspect of our management.
But when you go up to presenters or audience members after the sessions, introduce yourself and ask them how they plan to take the scientific info back to their patients, and a majority of those brilliant minds can't adequately translate the stats and science into "patient-friendly" terms... There's something amiss.
The poster hall was also a great place to get the nitty-gritty on new research and concepts, but most of the boards had large charts and loads of stats that were often difficult to understand unless you had the presenter right there to explain it simply. Or you already knew what you were looking at.
Even if this conference isn't "for the patient," you have to wonder if this stuff will ever trickle down to us PWDs in the trenches in ways that mean something to us...? That's how I would define success, if anybody asked me.
Everyone had news to share. Seriously. Did you SEE the number of press releases sent out before, during and right after the conference? This is prime time for those wanting to unveil anything D-related, but c'mon people... Spread things out. With everyone coordinating their announcements with this conference, one of my tasks was to attend the press briefings, the nuts and bolts of which can be found in the June 8-12 releases online.
The briefing room was slotted right next to where the ADA Press Room sat, where dozens of reporters from various publications hunched over PCs to plug out stories and updates. Some were PWDs and pump users, but most of the media folk didn't seem to have any obvious D-connection and a couple could be even be overheard asking each other basic questions about differences between types, the meanings of basal/bolus, and whether the term "diabetic" should be used (he, he).
I couldn't help but think of all the coverage in papers and on TV stations throughout the world exuding from conference, and how so many accuracy issues might arise... seems like something Diabetes Advocates might be interested in getting involved in for the future, as part of our push for media awareness about diabetes.
Oh, did I mention that the exhibit hall was HUGE? With elaborate company booths at every turn where you could find their particular gadget, gizmo or med in all its glorious hype?
But you know what? There wasn't anything really "new or novel" that I haven't seen before in some form or another. Lots of meters, pumps, CGMs and programs that all seem to basically do what every one of their predecessors have done. Except some are fancier, more colorful and modernized for the 21st century. But even those weren't anything that hasn't been announced before. I was hoping for the "next coolest thing you've never heard of before," but just didn't see it.
You had to go behind the scenes to talk with the execs, not the fleets of sales reps on the exhibit hall floor, to get the real story. It was like finding Willy Wonka inside a factory full of candy and oompa loompas, who really only sing the songs they're scripted for and aren't allowed to tell you anything about the real impacts of the candy they're making because of regulatory push back. (And yes, a Pharma company sales rep tells me that there are FDA "secret shoppers" who visit the Pharma and device-maker booths to listen to what's being said to people on the exhibit hall floor and make sure nothing off-limits is being pitched).
So, while the experience was a lot to absorb, much of it seems just for show.
It all seemed kind of disappointing, even if you could do cool things, like get your taken photo and transposed onto the cover of the newly-redesigned Diabetes Forecast magazine, visit any of the dozen or more free coffee stands scattered around, or get the usual kind of flashy propaganda about the newest products and services.
Value = Relationships
In the end, the biggest value of this conference is networking, IMHO. It's a giant mixer to help diabetes pros establish, maintain and strengthen relationships. It's about recognizing each others work, and hopefully acknowledging that it takes everyone's voice to achieve greatness.
We need the science exploring the theory. But we also need the translation to the real world. We need Pharma and device-makers to give us the tools to do these jobs, and we need both the docs and us patients to communicate clearly about what works and doesn't. We ALL have to listen to each other.
I'm excited and energetic about the brilliance, passion and desire to help PWDs. Now, I just hope the dots get connected.
So, that's that.
Back home in Indiana now, I'm finally starting to see "normoglycemia" rather than the stream of lows caused by the fast pace of covering the conference. Never a dull moment for us PWDs who are always on our feet (literally and figuratively!).
Oh, and I should probably mention there's one other golden truth that can't be ignored about the conference:
Next time, I need to listen to that old adage about wearing comfortable shoes for all the running around; this year's conference left me flat-footed in addition to brain-fried!