On June 14, we asked the health care industry to stop talking to itself about what patients need and want. We asked that the people who have the power to change things to instead listen to  the stories of 13 incredible people. We called it What’s the Fix? because we don’t presume to know the answer to the question, but we’re seeking it!  We asked, and then demanded, that the industry stop talking about “consumers”, and instead, spend just one day listening to them, the real people who faced wall after wall after wall in their own or their loved ones’ care, and pushed through with all their might.

These 13 people — authors, journalists, parents, young people and educators — attracted more than 650 participants online and in person, 5,700 tweets from 1,060 online participants, 2,000 comments and questions, and a nationally trending hashtag (#WTFix).

Those numbers feel good, but what’s felt the most amazing is to have so many people throughout the day tell me this was a day full of “heart speak” and inspiration. Here’s what I, and so many others, learned from these incredible people. Our lucky 13.

The Big Picture – Patients are the Sun in the health care universe. Let’s rotate around them.

The major theme of the day: until we put patients at the center, and treat the whole person, we are doomed to experience a care system that never improves. Each speaker presented this idea in different ways, but all shared what it took to make themselves or their loved one that central focus (with some still in progress):

Grit, determination, hope… and more grit.  When our speakers hit a wall in the system, they pushed on it. They found friends to help them climb over it. And some even found bulldozers and destroyed it. That wall crumbles when everyday people hear no and reply “maybe not today…but I’m not stopping until it’s yes.”

Our opening speaker Susannah Meadows shared her own story and the stories of others who, through old fashioned grit, turned their fear and pain into hope and forward momentum right through that wall. (All found in her new book The Other Side of Impossible: Ordinary People Who Faced Daunting Medical Challenges and Refused to Give Up). As a parent activated to do whatever it took to improve her son’s debilitating medical condition, she also set the stage for a day filled with parents who did the same.

When asked about her motivation for writing the book she said “if i can help one family its worth it”. Beyond just being noble, it would be a great mantra for the industry.

“The reasonable thing would have been for these people not to have hope. But rather than give up hope, they became it.” — Susannah Meadows

You can’t wait for things to change (and how to make an artificial pancreas). Grit was alive and well in the form of Dana Lewis and her awesome open source DIY pancreas! Dana, who joined forces with her boyfriend (now husband) to use widely available gadgets to create an artificial pancreas in her pocket to better control her Type 1 diabetes, showed what it means to stop waiting for the system to meet her needs, and instead meet them herself. Her OpenAPS movement is all about others accessing her success and making it their own. She even champions the #WeAreNotWaiting hashtag, another great rallying cry built from the patients perspective.

“Diabetes is the ultimate DIY. It has to be. People make up to 300 decisions daily that impact their blood glucose level.” – Dana Lewis

No one gets it done like a parent. Fred Vogelstein took us through his journey of getting the multi-year, $100K journey to get the FDA to approve the only drug that would curb his son’s 100 small Epileptic seizures a day. Derived from cannabis (CBD), this drug was the only one that worked.

Amy Gleason, Tami Rich and a panel of moms took us through the complicated medical worlds of their children, and how they had to become the medical experts on their kids’ conditions. All of the moms became activated to changing the overall patient experience for the better, with a “do anything i need to do to help my kid” type of motivation.

“I was not a medical expert. I was an expert on him.” — Tami Rich

Our mom’s panel, moderated by Beth Lambert and attended by Amy Gleason, Jennifer Giustra-Kozek and Dr. Madiha M. Saeed, focused on the journey from everyday parent to patient advocate, and how treating the whole child often means going beyond western medicine. They also, like many of our speakers, talked about the importance of community support in finding your way through that big wall.

“Moms support moms, and kids can support kids through chronic illnesses.” — Amy Gleason

The Future is Bright

Jameson Rich and Morgan Gleason (per moms Tami and Amy, respectively) gave us the millennials view of the inside look at the difficult world of the chronically ill, often hospital-bound patient. But their childhoods – and futures – are defined by their efforts to change the hospital experience — and the whole care system — for the better. From eliminating beeping machines to recognizing chronically ill patients basically live at the hospital, the system can shift to patient-first.

“We should start judging patient success on personal experience. If I can still ride my horse, I don’t care about an off lab result” — Morgan Gleason

And Beto Lopez, Andrew Richards, and Dan Munro gave us a glimpse into the future of medical schools, from technology incubators to put incremental changes into practice, to flipping the “big business” model, there are big strides happening to change the system at the ground level.

So what’s next for What’s the Fix?  

The next phase of #WTFix is all about making sure real people are front and center in the health care conversation. By continuing to highlight people’s stories of struggle and success, our mission is to encourage people to change the industry in whatever ways they can – both big and small.

The online discussions were so active that we are working on plans to keep them going with monthly tweet chats — #WTFix Wednesdays! More to come on that very soon. Also next up: helping the industry seek out their own patient panels, and helping to facilitate conversations that continue to put patients at the focus of health care is key to us, so we are working on plans for that as well.

Some of the tweets and the conversations from the event follow.