Reducing Diabetes Health Disparities through Social Media

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  • My name is Manny Hernandez, President of DHF… I cannot state enough how humbling it is to realize that it is a patient advocate, not a physician, standing up in front of you today. Thanks to the Endocrine Society for the invitation.I kinda like doing a keynote over dinner. That way, if I become too boring, you can use your silverware with your glasses to get me to speed up or move on!IN THE NEXT 1 I will be taking you to a journey through my own history, how it led to the creation of the Diabetes Hands Foundation, spend some time talking about the work we do (10,000 feet high in the air), climb up to 30,000 to look at some of the trends in diabetes today, and bring us all closer to the direct experiences of people touched by diabetes …. In an attempt to explore how social media can help us reduce health disparities.
  • 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 PCP 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. I was referred me to an endocrionologist: this is not an uncommon story.In 2003, I was correctly diagnosed as having LADA. And my love affair with insulin began!
  • 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. More than 3 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.TuAnalyze Hypo study (JAMA Internal Medicine)The study team, led by Elissa Weitzman, ScD, MSc, and Kenneth Mandl, MD, MPH, of the Intelligent Health Laboratory (IHL) in CHIP, published their findings online on Feb. 11 in the journal JAMA Internal Medicine."We don't know much about how populations with diabetes in general experience insulin effects and complications like hypoglycemia," said Weitzman, a social-behavioral scientist at Boston Children's and the study's director.Of the 613 TuAnalyze users who offered up data for the study (representing about a quarter of all TuAnalyze users), nearly half reported more than four episodes of "going low" in the previous two weeks and about 30 percent reported at least one severe hypoglycemic episode—one resulting in unconsciousness or seizure, or one which required glucagon, medical treatment and/or help from another person—within the last year. More than half of the respondants reported experiencing more than one impact or harm related to hypoglycemia, including avoiding exercise, daily debilitating worry and accidents or injuries.Measures of engagement on the part of the cohort showed that the participants both exhibited great interest in the study's findings and acted quickly on them."People in the community picked up on the data and started talking about how to better manage their diabetes day to day," Weitzman said. "Seeing that conversation, we could make midstream corrections in how we presented the data to the community so as to increase the health impact and keep them more aware of what was going on."
  • Aunqueestamosbasados en EstadosUnidos, mas de la mitad de nuestrasvisitasvienen de fuera de USA.
  • Let’s go up to 30-thousand feet high for a few moments…Have you noticed how many acronyms we have in diabetes?If the number of acronyms surrounding the lives of people with diabetes were an indicator of how well we’re doing, it would certainly feel like an indicator of progress.Not too long ago many of these acronyms on the screen (and the drugs, therapies, devices they represent) were not even part of our consciousness.DM LADA IR IDDMHCPendo CDE PCP KOL RN RD NPFDA 501(k) EU PMA RCTNIH CDC NDEP NIDDK DPPCGM PDM MDI AP BMI LDL HDL HBPGLP-1 DPP-4 SGLT-2 METBG FBG OGTT HbA1c FPGDKA CHF CKD CVD
  • ADA says diabetes costs totaled $245 billion in 2012, up worrisome 41%Sometimes we hear figures and they fly right past us, so here are a few comparisons of how much money is $245 billionAlmost $11,000 per person with diabetes in the USThe total budget of:The total GDP of:
  • As Dr. Rodgers from NIDDK mentioned today, ADA says diabetes costs totaled $245 billion in 2012, up worrisome 41%Sometimes we hear figures and they fly right past us, so here are a few comparisons of how much money is $245 billionAlmost $11,000 per person with diabetes in the USThe total budget of:The total GDP of:
  • The ADA noted that there are now 22.3 million Americans with  diabetes, up from 17.5 million in 2007 and 12.1 million in 2002 and 7.5 million people in 1997 (up 27% and 45% and 61%, respectively). By our math (based on NIDDK estimates of 27% of all people with diabetes being undiagnosed), we estimate that there are now over 30 million Americans with diabetes (undiagnosed and diagnosed). That makes me stop and think, and remember. When I was diagnosed in 1986, there were 30 million people globally with diabetes. Now, 30 million in the US alone. (Both include estimated undiagnosed.)
  • Though there’s a positive story in connection with improvements in A1c levels based in terms of total NHANES numbers,we also heard Dr. Rodgers mention how these improvements are fundamentally among white non-Hispanics and minority trends are not so promising.
  • Even though in the past week we saw a 3x spike in traffic to our web sites due to it, and more than 10,000 people watched the video we published calling her on it, It doesn’t help when people, anonymous Joe’s or public figures like the President of Argentina make statements like this one.Last time I checked, diabetes doesn’t discriminate between rich or poor…
  • You would imagine that, with 22+ million people diagnosed with diabetes in the US, 366 million people with diabetes in the world (and counting) it wouldn’t be this way, The perfect storm that is diabetes today is not only in the number of people diagnosed, the cost, the elusive improved outcomes, the ignorance…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.THIS IS A HUGE DISPARITY: NOBODY with diabetes should ever feel alone! No one.
  • And then this…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 yearVs.8,748 hours per year on our ownYou 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.
  • 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 missingConnections with other patientsTHIS is a disparity that I want to bring your attention to:The one that exists between the connected, empowered patient and the isolated patient.I believe this to be an idea with the potential to transform the way we think about diabetes management and patient engagement.This is an idea that can enable all of us to reduce disparities in efficient and cost-effective ways.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.
  • 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 missingConnections with other patientsTHIS is a disparity that I want to bring your attention to:The one that exists between the connected, empowered patient and the isolated patient.I believe this to be an idea with the potential to transform the way we think about diabetes management and patient engagement.This is an idea that can enable all of us to reduce disparities in efficient and cost-effective ways.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 sent to refill his insulin prescription, 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 5.9Today 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.
  • 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, nearly 40,000 people have done the Big Blue Test.
  • One of the organizations that has benefited from the BBT has been the S. Anthony’s Medical Clinic. Here’s a video we shot showing what they did with the funding they received through the Big Blue Test.As of today, $250,000 in Big Blue Test grants 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.This is an example of what happens when people with diabetes and their loved ones connect with their peers… this is an example of how we can help reduce health disparities in this space.
  • Crowdsourced… Dr. Donald Lindberg, Director of the Library, saying that if he read two journal articles every night, at the end of a year he’d be 400 years behind: nobody can keep up. The implication is, “Hey, look – the top guy says it’s no failure if a less trained person has seen something you haven’t.”http://epatientdave.com/2012/10/18/see-you-in-the-library.-yes-that-library./#.UUuJ4nw4VEo
  • Crowdsourced… Dr. Donald Lindberg, Director of the Library, saying that if he read two journal articles every night, at the end of a year he’d be 400 years behind: nobody can keep up. The implication is, “Hey, look – the top guy says it’s no failure if a less trained person has seen something you haven’t.”http://epatientdave.com/2012/10/18/see-you-in-the-library.-yes-that-library./#.UUuJ4nw4VEo
  • Those who know me, know that I am a hugger. When I write to people, I routinely sign by saying “Big hug!”But nothing could have prepared me for what happened to me in the Exhibit Hall of ADA almost 4 years ago.The story of a hug…
  • 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. And this is an unforgivable disparity.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 diabetes is a self-management condition.Because we don’t yet have a cure .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 increase knowledge, generate positive change in the community and the world around us…So, as part of our efforts to reduce health disparities, please 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-Government and payers: this morning, Dr. Golden showed us how interpersonal connections topped the list of successful interventions for reducing diabetes health disparities. Successful interventions save everyone money, and God knows we need to save money wherever we can.-Doctors: Open up to diabetes online communities, and diabetes blogs,and recommend them to your patients.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. So please join us in making this vision a reality: let’s take this step together to reduce this health disparity!Thank you!
  • Diabetes Advocates brochures!!
  • Reducing Diabetes Health Disparities through Social Media

    1. ReducingDiabetes Health Disparities through Social Media manny hernandez, president @askmanny
    2. I am from here … not here.
    3. www.askmanny.com
    4. http://www.flickr.com/photos/bernfarr/1737659464/
    5. 28K members,1.5M+ annual visitors
    6. 20K members,1.8M+ annual visitors
    7. Almost log into our Social20K Networks at least once/monthMembers(40%) Ning member data. Last visit data only goes back to July 27, 2011.
    8. Type of diabetes (among active members)80%70%60%50%40% Type 1 Type 230%20%10%0% TuDiabetes EsTuDiabetes Ning member data. Last visit data only goes back to July 27, 2011.
    9. Geographic location (among unique visitors) 21% 41% 4%4% 4% 5% 8% 12%
    10. RESULT OFAS APARTICIPATING INOUR PROGRAMS…
    11. feel a larger sense of connection60% with others touched by diabetes Jan. 2013 Survey Results – 1,230 respondents
    12. feel better equipped to50% make positive changes in their diabetes Jan. 2013 Survey Results – 1,230 respondents
    13. diabetes today…
    14. Cost of diabetes in the US US$ Billions$300 $245$250$200$150$100 $50 $0 1997 2002 2007 2012http://www.diabetes.org/for-media/2013/annual-costs-of-diabetes-2013.html
    15. Cost of diabetes in the US US$ Billions $245 billion$300 $245$250 = GDP (2012)$200$150 = Combined$100 revenue $50 (2012) $0 1997 2002 2007 2012http://www.diabetes.org/for-media/2013/annual-costs-of-diabetes-2013.html
    16. Millions of people (diagnosed) with diabetes Millions in the US30 25.8252015 “ONE ADULT IN TEN10 WILL HAVE DIABETES BY 2030.” 5 0 1997 2002 2007 2012http://www.diabetes.org/for-media/2013/annual-costs-of-diabetes-2013.htmlhttp://www.idf.org/media-events/press-releases/2011/diabetes-atlas-5th-edition
    17. Prevalence of A1c <7% 60% 50% 40% 30% 20% 10% 0% 1999-2000 2001-2002 2003-2006 2007-2010Casagrande et al., Diabetes Care 2013; Hoerger et al., Diabetes Care 2008
    18. “… there is still atendency toward one-size-fits-all diabetesmanagement, and thisis clearly not workingwell. More personalizedmanagement, and a"treat-to-success" ratherthan "treat-to-failure"model is critical.” ~ Kelly Close
    19. “Diabetes is a rich mans illness.”President of Argentina (March12, 2013)http://www.dailymail.co.uk/news/article-2293564/Diabetes-rich-mans-illness-Argentinas-president-provokes-outrage-saying-illness-afflicts-affluent-eat-live-sedentary-lifestyles.html
    20. The stigma, the isolation http://www.flickr.com/photos/exper/2475707555/
    21. Every year…
    22. one leg missinghttp://www.flickr.com/photos/usarmymutt/4678321491
    23. one leg missinghttp://www.flickr.com/photos/usarmymutt/4678321491 http://www.flickr.com/photos/essjay/4829461021
    24. 1) offering, getting support
    25. 2) sharing our stories2) sharing our stories
    26. 3) making a differencewww.BigBlueTest.org #bigbluetest
    27. www.BigBlueTest.org #bigbluetest
    28. 4) Increased knowledge“If I read two journalarticles every night, at theend of a year I’d be 400years behind.” ~ Dr. Donald Lindberg, Director, National Library of Medicine (1984-)
    29. 4) Increased knowledge“If I read two journalarticles every night, at theend of a year I’d be 400years behind.” ~ Dr. Donald Lindberg, Director, National Library of Medicine (1984-) http://epatientdave.com/2012/10/18/see- you-in-the-library.-yes-that-library
    30. wordinyourhand.org
    31. thank you!
    32. One more thing!

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