Hi! Long time, no see! I think we can all agree that we’ve had an amazing day and a half here in Arlington, so far. Thanks to Joslin for putting this event together! And, personally, thanks to Sanofi for the opportunity to talk to you for a longer period of time. I hope the stories and ideas I will be sharing with you in the next 30-40 minutes will give you more food for thought, as you enjoy your meal.
That is… the South American country, not Minnesota, the state in the US. I just clarify that b/c you if you hear me say Venezuela in the next few minutes, it may actually sound like Minnesota.
I used to have hair… lots of it. (don’t you just love old photos?) I also used to be an Electrical Engineer back in Venezuela, where I come from.
I used to not have diabetes. But in October 22, 2002: I was told by my primary care physician that I had diabetes… just as I was starting a new job (in the middle of a very tough period of our economy). I started blogging about my life with diabetes then. Here’s what I wrote. For several months, I was unable to keep my blood sugars in control. My primary care physician referred me to an endocrionologist: this is not an uncommon story. In 2003, I was correctly diagnosed as having LADA, Latent Autoimmune Diabetes in Adults (not type 2 diabetes), an autoimmune form of diabetes that appears in adults.
In 2005, I started wearing an insulin pump and a year later, I started attending an Insulin Pump Users Group. For the first time, I was meeting so many people with diabetes just like me. Until I connected with others with diabetes, I had my wife, my son and my doctor as my source of support and information. In one hour I learned more practical information than I had learned in a year of wearing my pump and 4 years of having diabetes.
In 2007 we started connecting people with diabetes and their loved ones to one another through platforms for open dialog, at the Diabetes Hands Foundation. One of those platforms is TuDiabetes.org (in English) and another one is EsTuDiabetes.org (in Spanish). As of 2012, nearly 50,000 registered members connect through our communities. Almost 2 million people touched by diabetes from all over the world (more than half are from outside the US) feel understood, connected and re-energized, instead of powerless or alone.
How many of you know what this is? If you are familiar with the WDD symbol (blue circle), you might think this is it. ACTUAL HOURS: 12 hours per year Vs. 8,748 hours per year on our own You may not see it… but there is a VERY thin line somewhere across the donut chart that represents the time in our lives as people with diabetes that we spend with a medical professional, whether it is a doctor, a nurse practitioner, a nutritionist, etc. = about 0.1% of our lives in the course of a whole year. As much as I’ve loved seeing my endos, I really never get enough time to spend with them… nor did they have all the answers to all my questions. Plus, I found myself learning just as much if not more from other people like me… as I did when I started attending the Insulin Pump Users group.
You would imagine that, with 366 million people with diabetes in the world (and counting) it wouldn’t be this way, But the truth is that diabetes can be a very isolating condition. Although people with diabetes are certainly not alone, they feel alone and misunderstood. Just think how tough it becomes to go through your journey through life with diabetes, with the non-stop daily management tasks that it entails… all by yourself.
I want to take the opportunity of being in this venue to challenge an assumption that we have made for many years. 3-legged stool missing Connections with other patients I believe this to be an idea with the potential to transform the way we think about diabetes management and patient engagement. Let me share with you a few stories from people with diabetes who have connected with others like themselves, so you may see the benefits that they enjoy.
What do they get? Parents, adults with type 1 or type 2 diabetes… all can come, and offer and get support . People that get you as a patient. About ten years ago, Reed knew there was something "wrong" with him when he found himself driving in traffic in the wrong direction. He was in the middle of a low blood sugar episode. He had type 2 diabetes. Still, he was in denial for some time...
After he retired and eventually moved to Florida, he was told he had an A1c of 9.5. He was put on insulin, but he was filled with questions. Like many others, he googled his way to TuDiabetes. He connected with many that made him feel understood, and listened to.
Through what he learned and shared with his doctor, he has been able to bring his A1c to 5.9 Today he is 85 years old. His blood sugars rarely steers far from 120 mg/dL. He says TuDiabetes saved his life. So he gives back to the community…
Here you see Reed doing what he does EVERY morning: before anything else, he welcomes all the new members on TuDiabetes.org pointing them to existing resources within the community or other people they can connect with, plus stops by the pages of all the people who are having a birthday that particular day. His doctor is not only happy that he is doing this for his blood sugars, which are outstanding. He is much sharper mentally thanks to his engagement with the diabetes online community through TuDiabetes. In a sense, he has found a bigger purpose in life that keeps him going.
The "You Can Do This Project" is a clear example that demonstrates the significance of peer-to-peer support. People expressing themselves, sharing their story, and sharing the details of a life with diabetes that only another person with diabetes can know. You Can Do This is a growing community of videos, created by and for people with diabetes, that provides validation, hope and encouragement through honest talk.
Ever since she discovered this space to share her stories and learn from other people’s stories, she also gives back…
The following are images from the Big Blue Test, a program of the Diabetes Hands Foundation, to inspire people to get up, get active, and join the movement. In 2009, people were testing and sharing their values before and after physical activity. Now it’s no longer just exercise, but exercise that helps others… Since 2010, more than 10,000 people have done the Big Blue Test. In 2012, our goal is to get Big Blue Test 20,000 entries.
In spite of the lingering tragedy that people in Haiti live in… Which doesn’t escape people touched by diabetes.
The hope in the eyes of the people we met was incredible! These are the folks that the local diabetes association essentially saves from a certain death, by involving them in their own care. And we are being able to make a difference in their lives, through a Big Blue Test grant of $25,000 that will become possible through people’s participation doing the Big Blue Test (as many times as possible) between Oct. 15 and Nov. 15. Haiti is only one example of a 3 rd world country with the need… Come January 2013, $250,000 in Big Blue Test grants will have been awarded to sustainable charities helping people with diabetes around the world who -in many cases- would literally die due to lack of access to insulin, testing supplies, and diabetes education.
The DiabetesMine Innovation Project began in 2007 as an idea to improve the functionality and aesthetics of the medical devices and tools that patients with diabetes use — and often wear on their bodies — every day of their lives. The initiative developed into an international crowdsourcing competition that has awarded over $50,000 in prize money over the past 5 years… Several of the ideas that were funded by Amy’s project have become commercialized.
The medical community is starting to realize the value…. STEVE EDELMAN – endo out of San Diego who lives with type 1 diabetes himself. He’s a big supporter of the DOC (the Diabetes Online Community). HOPE, WARSHAW – CDE who serves on the board of AADE. For the past 2 years, she’s chaired a panel at AADE conferences about the DOC. MICHELLE LITCHMAN - CDE and Nurse Practitioner out of Salt Lake City, UT. As part of her PhD dissertation research, she is studying the impact of online peer-to-peer health connections among PWD. There’s much more to be done, even if we are connecting… say 6 million people touched by diabetes. That is far from enough. Because there are still 360 million feeling alone and not engaging with their diabetes, lacking life-saving emotional support, missing on the opportunity to learn from others like themselves and share their own experience, and not helping us as a diabetes community at large make the biggest possible impact we can make in the lives of others.
Sometimes, we get so carried away with the research papers, the clinical trials, the prescriptions, the reimbursement, the medical records, the fundraising… all those details… That we can lose sight of what matters most: the people touched by this condition, and the fact that most of the time, most of them are alone. Before I leave today, I want to leave you with this message: “ No one living with diabetes should feel alone.” Because diabetes is chronic, with us 24/7. We don’t leave it in the office: we bring it everywhere we go. Because we don’t yet have a cure . Because diabetes is a self-management condition. Because we can have a bigger purpose in life when we help ourselves and help others. Because we can make our dreams come true when we connect with others like ourselves. Because we can generate positive change in the community and the world around us… Take a moment and think WHAT YOU CAN DO TO HELP CONNECT MORE PEOPLE WITH DIABETES? -Funders, industry: Support groups making diabetes connections between patients possible -Doctors: Recommend diabetes online communities, and diabetes blogs to your patients. -Technologists: find new and innovative ways to connect more people touched by diabetes. -Government and payers: connections lead to improved health outcomes, improved health outcomes save everyone money. Todd Park opened up the conference saying: “Patient engagement can be the blockbuster drug of the 21 st century.” I agree with him! Everyone: Get people with diabetes connected, so that everyone living with this chronic condition may become engaged in their management, and NOBODY with diabetes may feel alone any more.
Together we’re stronger! So please join us in making this vision a reality: let’s write a prescription for change together! Thank you!
About Diabetes Hands Foundation, our programs, etc.
Transcript of "Patients Prescribing Change - Luncheon Keynote at Joslin Diabetes + Innovation, 9/24/2012"
patients prescribing change manny hernandez, president @askmanny