Remember the days when the only diabetes conferences were those big, stiff events put on by national organizations aimed at medical professionals?
Sure, those big industry and policy events have always been important and are arguably about patients, but they weren’t necessarily designed by us and for us, nor did the many exhibit booths, presentations and panel discussions include the key voice that would add a reality check to diabetes care issues — us patients!
New PWD (people with diabetes)-led events are coming into their own, with the latest additions taking a whole new direction in how they engage those of us with faulty pancreases through webinars, online interaction, and also live person-to-person conversations that don’t rely on medical professionals or materials to guide the discussion.
It’s encouraging to see both offering a chance to talk about important issues in the lives of PWDs that normally aren’t the focus at most “professional” events — like how to live well in the aftermath of diabetes complications, and things like diabetes burnout, depression, sex, discrimination, and financial struggles.
Because these events, crafted for us and by us, address the “real deal” of living with diabetes from top to bottom.
A Little Hope, Once Again
This past Tuesday was the second annual D-Hope Conference, a free online web-chat broken up into three panels over the course of three hours. Last year brought 500+ people to this event’s debut, led by longtime type 1 PWD and well-known D-Advocate Scott Johnson in Minnesota, and supported by partner organizations the Diabetes Hands Foundation and dLife, along with sponsoring company Pamlab.
This year again, more than 500 people signed up and tuned in for to the conference live — which was all about talking openly and thinking positively about diabetes, especially the tougher topics like complications and emotional health that are often ignored or hidden because they invoke fear and shame.
You can see some of the discussion material by searching the hashtag #dHopeConf on Twitter.
All three panels were great, IMHO — the first featuring PWDs Christel Aprigliano, Karen Graffeo and Dr. John Anderson; the second with PWDs Mike Lawson and Kerri Sparling along with CDE Pam Ressler; and the third featuring PWDs George Simmons and Dr. Jen Nash in England.
I found myself nodding my head as everyone spoke — from the very start as Karen noted that our gut reaction about complications is “they’re scary” and we’d rather ignore the conversation than embrace it. Anderson encouraged people to talk with their doctors, and at the same urged his colleagues to not judge or blame patients but rather to talk positively about complications when possible.
To me, it meant a lot to hear and endo like Anderson recognize that mental health is actually a common complication of diabetes, and I hope more endos follow suit on that train of thought. And in the third panel, George echoed many of the same sentiments about needing to find the best HCPs who won’t judge, but will work with us as equals and not make us feel shamed and blamed.
Btu personally, I liked the second panel best, because it focused on blogging and social media use in coping with chronic illnesses. Pam Ressler pointed to a 2012 study she conducted researching the online patient blogosphere and how it’s benefited people with diabetes and beyond in other patient communities. No other study had looked at that issue before, she said.
Her findings showed enormous value in encouraging connections and peer-to-peer support — spot-on with our experiences in the DOC.
The challenge continues to be getting more medical professionals to recognize the importance of this peer interaction and, even if they aren’t online themselves, and to encourage their patients to seek out peer connection to talk out issues that the medical care team isn’t equipped to handle. Amen!
It’s very powerful when people share their stories, Ressler said, recognizing of course that blogging and social media use isn’t for everyone and you can’t make a “blanket statement about online interaction.” Totally agreed. But for a huge number of us patients, this kind of peer interaction is at least as important to our success and well-being as spending time with a doctor or CDE.
These are exactly the kinds of conversations we PWDs need, and it’s really great to see the D-Hope Conference creating a vibrant forum for discussion. And it’s not alone in doing so…
Going Offline for an UnConference
Less than a week ago, we got word that a first-ever UnConference for PWDs is planned for March 12-15, 2015, at the Flamingo Hotel in Las Vegas, Nevada.
Yes, an in-person Vegas-based conference just for the patient community!
This unique event is the brainchild of our friend Christel Aprigliano, who was also involved in the D-Hope Conference and has been an incredible asset to many other DOC efforts like the StripSafely campaign on glucose meter and test strip accuracy and our own DiabetesMine Patient Voices Contest and Innovation Summit in 2013. This event is officially being organized by Christel’s newly-created non-profit, The Diabetes Collective, whose mission is “to inspire and support the diabetes community” and is in the process of obtaining a 5013 status.
Here’s how she describes this new venture:
Traditional conferences focus on a group of experts or panels to share information with an audience, with a question-and-answer period at the end. The agenda and tracks are set well in advance. Participants may have to choose between sessions, so that if they attend one presentation, they’ll miss another. There is very limited time to participate in group discussions between participants and often the only time to learn from peers is in the hallways or during meals. An “unconference” allows participants to create and moderate the agenda, allowing for a wide variety of topics and viewpoints that might never be covered in a traditional conference. Using various sharing methods that focus on drawing out responses from all attendees, those in the room can learn from each other in a peer-to-peer environment.
At The Diabetes UnConference, every participant is an expert. All attendees can ask and answer questions and learn from their peers in a safe setting where there is no judgement or wrong answer. Topics may include: diabetes burnout, depression, sex, discrimination, financial issues, getting inspired to exercise, family dynamics, parenting with diabetes, revealing your diabetes to others, or even what the best treatment for hypoglycemia is for each person.
Oh, and it’s for ALL people with diabetes, regardless of type!
btw, behind Christel there’s a whole team of well-known PWDs and DOC’ers helping with coordination: Bennet Dunlap, Heather Gabel, Manny Hernandez, Scott Johnson, George Simmons, and Kerri Sparling.
The three-day event will cost just $139 per person including meals, plus the hotel stay is $207 on top of that ($69 per night), and of course you’ll have to pick up the tab for your own airfare. Christel says she was delighted to get such a great deal at the Flamingo for relatively inexpensive room rates, and she’s paying out-of-pocket for conference room rental, etc. until hopefully some sponsors join in on the excitement. Meanwhile, their team is coordinating with many contacts to figure out if scholarships or sponsorships might be possible to help D-peeps get there.
But what if you can’t make it in person? Will there be live-streaming or another online component to attend virtually? No, Christel tells us, this is a strictly offline affair.
“Bluntly put, but this event focuses on in-person attendee participation. There will be no wifi in the room and we are discouraging laptops and smartphones during the interactive points of the conference. The point of the conference is to create in-person peer-to-peer relationships that can be bolstered by the diabetes online community AFTER attending the conference… I’ve been to events where people try to involve others through Skype or live stream… and this isn’t one of those events. I expect there to be some heavy emotional discussions and want to ensure that all feel safe and comfortable in the room.”
Wow, kind of wild… in this day and age, it is a rare thing to have an innovative conference like this actually be designed to NOT be interactive with the online world. Sure, if you aren’t there in person then you will miss it. But that’s not a bad thing. Keeping people focused on the live action on-site encourages real, focused communication that’s often missing in this ultra-digital world. And of course, everyone will have plenty of opportunity to write about it after the fact.
That’s the whole idea of D-Meetups (don’t call them support groups – cringe), and it’s one of the best parts of attending any official D-event or conference. Seeing people. Talking to people. Getting to know them the old-fashioned way.
We love the whole idea of this conference. But what we’d really like to see is an effort to get new faces and new voices to attend — those who haven’t had the chance to attend a big D-Meetup event like this before. That’s really important IMHO, so that it’s not always get the same group of insider (awesome) D-peeps being seen and heard.
Overall, it’s really heart-warming to see an increase in these kind of events — the ones we patients are actually creating. They have more of a bang for the buck, so to speak, and can really dig into the psychosocial side of diabetes that so desperately needs to be addressed.
Very encouraging to see all of this happening, and we are excited to help in whatever way possible!