This post originally appeared on Diabetes Mine.
Forty-five makers, thinkers, designers and doers gathered in Cincinnati for a two-day meeting to kick off “Phase Zero” of a new initiative to imagine a new system of care for people living with Type 1 diabetes (T1D). The best way I can describe the group is that everyone was “game,” meaning up for anything, silly or serious.
I will leave the official accounts of the event to the hosts, the C3N Project and T1D Exchange. But I can share a few vignettes.
We were assigned to tables of 8 people, one of which was a PWD or parent of a child living with T1D. Our first exercise was to identify specific challenges and opportunities in the health care system, based on their experience.
A mom of two children with T1D in my group took us through a typical day, midnight to midnight, as our designated scribe attempted to take notes. The ideas were flying by so quickly that three more people grabbed Sharpies and Post-its in attempt to keep up.
When we categorized the 50+ ideas, the “communications” cluster was the biggest one. She pointed out that she is able to keep in touch with her kids and the pharmacy via text messaging, but clinicians take up to three days to return a phone call – a complete failure to recognize the real-time decision-making needed when managing diabetes. How might we change that?
Each non-PWD participant was given the opportunity to test their blood sugar before lunch and then try to calculate the carbs of what they were planning to eat.
We were each handed a OneTouch Ultra 2 meter, an alcohol prep pad, a lancet, and a test strip. We listened carefully to the expert PWD at our table and proceeded to mess up anyway, inserting the strip upside down, not squeezing enough blood out of our fingertips (the side of the finger, that is, thanks to her advice that pricking the finger pad really hurts), etc. I failed to hold the strip steady so the blood could get sucked in correctly and had to do it again. We laughed and knew that this was a tiny – miniscule! – part of the experience of living with T1D. But it was a great hands-on exercise.
We broke into different groups to brainstorm ideas for tackling a specific challenge. My group focused on how to help kids be self-sufficient while also keeping them safe.
We came up with the idea of a peer support group akin to the Gay-Straight Alliance or LGBTQ clubs that exist in many schools – anyone can be part of it, not just PWDs.
Our vision is to make it cool to be supportive. We had a lot of fun dreaming up features like a “Vice Advice Hotline,” a safe, authoritative information source for teens with T1D who want to know the pros and cons of marijuana vs. alcohol, for example, but can’t exactly ask their parents or clinicians. And since teens often have a dark humor about their situation, we came up with a few names: The Chronic;The Living Dead; The Try Anyway Club (as in: we’re all going to die, but let’s try anyway).
One of the most powerful moments happened on Day Two, when we were talking about patient-reported outcomes (PROs) and what kind of data we would like to collect and include in the T1D conversation (regardless of whether it would be for home or clinical use).
Someone suggested we consider tracking “happiness” and asked for examples of effective mood measures. A PWD spoke up with the request that we focus instead on measuring the burden that he and everyone with diabetes carries.
He said that the weight of constant measurement, calculations, shame and blame, needing to plan ahead for every situation – including the TSA screening later that afternoon – is a very personal burden that sits on top of his relationships at home and at work. He already knows that is what most affects his happiness. He doesn’t need anyone to quantify it for him. Instead, he needs help quantifying and lifting the burden. He wants to be able to forget about diabetes for a few hours. Then he can take care of his own pursuit of happiness, thank you very much.
If you’re interested in learning more about the event, check out Joyce Lee’s Storify of the #makehealth tweets. If you would like to contribute, you can join the Glu community and/or join the C3N Project’s LinkedIn group. And stay tuned to the C3N Project and T1D Exchange sites for future updates.
jen powell says
Susannah, this is a great summary of our kick off for this important work! we are now forming workgroups to continue to develop design requirements for an optimal ‘system’ of care. One group will be charged with how to create stronger support for patients and their caregivers outside of the health care system … so that we can address the question of ‘how to reduce the burden of this disease’ in daily life? We’d love to get ideas from your readers as we move this forward!
Susannah Fox says
Thanks, Jen! It was an amazing couple of days and I hope more people can be part of the conversation we started there.
Deborah Greenwood says
Thanks for sharing. So much needs to be done around the issue of real-time decision making.
I am so excited that you will be speaking at our AADE meeting in August and happy your expertise is benefiting the world of diabetes! Thank you for accepting our invitation! Really want to share messages like these with our membership!!
Susannah Fox says
Thank you for the invitation! I’m thrilled to be able to join you in New Orleans.
John Sharp says
Sounds like a similar experience I had at the Diabetes Mine Innovation Summit and D-Data Exchange in November. Great to see T1D taking such an active role in their health. A role model for others.
Susannah Fox says
Yes! That looked like another great event. If anyone else wants to check it out I found:
Diabetes Innovation Progress: Walls Tumbling Down
A video highlight reel.
And all the presentations.
Michael Hoad says
At the end of your note: I love the idea of a PRH – “patient-reported happiness”! It does in fact turn out that happiness is very powerful medicine. Much of it is deep in our genes and upbringing, but encouraging patients to see out happy moments (such as with friends) ain’t a bad idea. And I know that for many patients, happiness means forgetting about the disease for any length of time … I was part of the launch of Bringing Science Home to help anyone with a chronic illness. We found a major gap of support for parents – who often add chronic guilt to their fears. https://www.facebook.com/BringingScienceHome?fref=photo
Susannah Fox says
Thank you, Michael, that really resonates with me. I’ll “like” the page and will look forward to updates!