Dozens of diabetes advocates descended on Disney World recently for the second-ever MasterLab event, hosted by the Diabetes Hands Foundation (DHF), just prior to the start of the annual Friends for Life Conference in Orlando, FL.
About 130 people from the Diabetes Community came together, convening from roughly 30 states and five different countries.
The first-ever MasterLab last year was a single day, and it sounded like a pretty spectacular first event. But this year brought an extra half-day program, and it followed a big change at DHF: longtime leader Manny Hernandez stepped down at the start of this year, welcoming our friend and fellow type 1 Melissa Lee as interim executive director.
Melissa and the DHF team definitely hit it out of the ballpark, IMHO. As you can see from full agenda here, the stellar lineup of presenters included a slew of well-known D-advocates, non-profit and imitative leaders, industry insiders, and social media gurus. The overall theme was that we can do better in the D-Advocacy world to tell our stories in a more effective way, especially if we can bridge the divide between type 1 and type 2 to work together as one community -- instead of blaming or actively stepping on each other's toes.
Like many others present from the Diabetes Online Community (DOC), we were live-tweeting using the hashtag #MasterLab, so be sure to check that stream out for the play-by-play.
Here's our analysis of some of what stood out from this second annual event:
A House Divided on Diabetes?
The message was clear that we can accomplish more as a united community, rather than a bunch of disparate individuals or groups fighting our own battles and not looking at the bigger picture. If we're fragmented, the changes we're advocating for -- increased funding for research, improved access for technology and treatment, better supplies and devices, and heightened public awareness about diabetes -- won't materialize.
The opening keynote came from Tom Boyer, who is not only Director of Government Affairs at Novo Nordisk, but is also a fellow longtime type 1 and D-advocate himself. His talk was eye-opening, especially when he pointed out how former President Bill Clinton's speech with the ADA back in the 90s was the last time our community has achieved true national-level attention.
He called for the Diabetes Community to do better, saying we really need to be like The Musketeers.
Wait, what?! Yep, this MasterLab was held at Disney World, remember? So Tom brought it home with the Disney-themed Musketeers who could basically be seen as chanting the motto, "All for One, and One for All."
That should be us, he says. We need to stop raising our swords against each other, and instead stand side by side to wage the battles that need to be fought.
He says this kind of unity was achieved in the 90s, but began to fizzle in the 2000s. And now, we need to get back to that level of community cooperation. This call to action seemed particularly timely, in the context of the very recent CrossFit debacle, which brought up a lot of talk about ditching the bickering and typecasting between T1 and T2, to stand united and advocate as one community.
This prompted my tweet:
Tom went on to say that in the 2000s, diabetes advocacy has gone "from being a thermostat to being a thermometer," in the sense that our community stopped adjusting the temperature and tone of advocacy, to simply listening and measuring without taking the action necessary to really make a difference.
Now is the time for our D-Community to once again to start acting like a thermostat, rather than a passive thermometer -- when advocating to legislators, reaching the media, and just finding our own voices when it matters most.
This was also emphasized in the closing keynote, too, by Kenneth Moritsugo, a fellow diabetic who is most well-known as the former U.S. Surgeon General, as well as a former head exec at JnJ Diabetes Solutions.
We can no longer play spectator. We must become better advocates. -Kenneth Moritsugo #MasterLab
Right on, Ken! Preach it.
On Patient Storytelling
The power of patient storytelling is now uncontested in the healthcare world.
We heard some great advice on how to tell a good story, be engaging, stir emotion and most importantly, make those on the receiving end actually want to learn more or help spread the word about our diabetes message. There were some great bullet-points on how to best interact and get media's attention, and to go for the local newspapers or smaller markets to make an impact on a more local level where people are at (instead of going for that big front page story that probably isn't realistic).
Particularly insightful was a powerful presentation by Marina Tsaplina of The Betes Org (diabetes performaning arts group) on the need for a collective narrative. "An effective public narrative inspires hope, raises questions, gives meaning, and unites heart, head and hand," she said. A lot of what she said was deeply rooted in her arts background, but it was spot-on in how we need to spark emotion for the most effective story-telling and advocacy punch.
Well-known advocate Kim Vlasnik touched many of our hearts while presenting on the popular You Can Do This (YCDT) initiative she created, which is all about peer support and sharing those "me too" moments so no one feels alone. Telling her own story about starting the YCDT Project, she talked about the challenges and rewards in raising your voice for what you feel is important. Often, you just have to #GoForTheNo (don't be afraid to fail!) because great ideas shouldn't exist only in your mind, but should be shared -- and the worst someone can do is say no.
During one of the presentations, we were tasked with a challenge: If we had 30 seconds to make a diabetes pitch in an elevator (the famous "elevator pitch"), to someone really important who can make a difference, what would we say? Here's what I came up with:
"I'm someone who can do anything I want in life, but every moment of the day is punctuated by fears and uncertainty about whether I'll make it to tomorrow -- thanks to the dangers of low blood sugar, limited access to care and medical supplies, and the high cost of insulin. Living with diabetes doesn't have to be like this. You can help."
Healthcare Access and Accountability
These issues were weaved into the focus groups on the final morning of MasterLab, with breakout sessions delving into possible solutions. I very much enjoyed a panel discussion on how to deal with insurance denials. With our community's current fight to get fair coverage of CGM from Medicare, a big point was that we all need to be wary of what Medicare is doing -- because what Medicare does, other federal insurance programs and the private insurance market often follows. This was a big topic for two simultaneous sessions, from the Diabetes Patient Advocacy Coalition (DPAC) and also a panel discussion on Insurance Appeals.
Even though many may not feel impacted by Medicare, the point is that they'll be coming for all of us soon, with competitive bidding forcing limitations on CGM and insulin pump coverage, the number of test strips we can get, or even access to necessary education and care. It's only a matter of time before other insurers follow suit.
The Power of Diabetes Social Media
One of the most fascinating presentations came from Thomas Lee of Symplur, a company that analyzes social media use among the healthcare communities. The diabetes-specific social media analytics were intriguing, and gave some clues about how social media can be better used for advocacy. .
For example, between January and June 2015, 60% of the tweets from people with diabetes that were retweeted contained images, versus the 25% of tweets without images. So pictures matter!
Tom explained how anyone can look up pretty much any hashtag to see who's using it, through the Healthcare Hashtag Project. He even showed a slide documenting which keywords related to "diabetes" are used most by patients, advocates, and doctors:
On the second morning of the event, participants got to see this data analysis taken to the next level by Christopher Snider, a blogger, advocate and now also official Patient Community Advocate at Symplur. Chris wasn't actually able to attend this year's MasterLab, but the post he published on July 7 explaining Symplur's diabetes community research generated a ton of buzz on-site.
Amy O'Connor, the social media guru at Lilly Diabetes who's behind @LillyPad on Twitter, brought it all home with a look at "digital advocacy" across the board. Since more government officials are looking to social media, this is where we can help elevate our advocacy presence on diabetes.
Amy says we can even work to "take back the hashtag" #diabetes -- refocusing it on our own patient-generated tweets about real-life concerns with diabetes, instead of whatever commercial media or other groups are doing with it to further their own interests.
There much more presented and discussed at MasterLab, from some specific Calls to Action on how we can better engage our lawmakers and policy-makers to what we advocates need to do in balancing our own lives and diabetes. That is something we'll explore in other posts down the road.
For me personally, this MasterLab was an incredible learning experience, and a huge source of inspiration and motivation.
I loved this call to action from Emily Coles of the Diabetes Hands Foundation:
So, let's do it, Diabetes Community -- time to start setting the temperature, instead of just standing by and observing the swings. Let's be Diabetes Advocate Musketeers, and come together as a community to advocate for all.
Note that the annual MasterLab program is open to all; registration is $100, unless you are registering for the FFL conference too, in which case you'll receive a Reg Code for free attendance of MasterLab. So make sure to keep July 5, 2016 in mind for the third event of its kind.