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The value of social media for diabetes advocacy
 

The value of social media for diabetes advocacy

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  • Before diving deeper into other diabetes social media tools and platforms, let me spend a few minutes touching on WHY diabetes social media matters to people with diabetes. <br /> <br /> How many of you know this symbol? <br /> It looks a lot as the symbol for World Diabetes Day… but it is not.  <br /> <br /> The blue in this circle can be seen as: <br /> How often we DON’T SEE a doctor or a diabetes educator. In the course of a whole year only about 0.1% of the time we are in the company of a medical professional for our diabetes. <br /> <br /> This IS very much a condition that we have to manage on our own… and it’s not easy, it can really get to you… <br /> <br /> So imagine for a second how it must feel to not have anyone else to talk with or share about this thing that you live with 24/7. <br /> <br /> <br /> An informed patient is great. It’s far better than a patient that is lost in the midst of his/her chronic condition. <br /> But information without action hardly leads to improved outcomes. <br /> <br /> Engaged patients take the information in their hands and act on them. <br /> <br /> So they key becomes not merely INFORMING people with diabetes, but engaging them so that they can lead their lives (that 99.9% of their time away from medical professionals) <br /> Making the best possible decisions they can. <br />
  • An informed patient is great. It’s far better than a patient that is lost in the midst of his/her chronic condition. <br /> But information without action hardly leads to improved outcomes. <br /> <br /> Engaged patients take the information in their hands and act on them. <br /> <br /> So they key becomes not merely INFORMING people with diabetes, but engaging them so that they can lead their lives (that 99.9% of their time away from medical professionals) <br /> Making the best possible decisions they can. <br /> <br /> About ten years ago, Reed knew there was something "wrong" with him. <br /> It didn’t take long for his doctor to tell him that he had type 2 diabetes. <br /> He was told he had an A1c of 9.5. He really didn’t know what this meant. <br /> He started on insulin, he was feeling hopeless and in denial… <br /> <br /> Reed has been able to bring his A1c down to 5.9 through what he has learned on TuDiabetes (and shared with his doctor) <br /> Today he is 85 years old. His blood sugars rarely steers far from 120 mg/dL. <br /> He says TuDiabetes saved his life.
  • Dr. Donald Lindberg, Director of the National Library of Medicine (the world’s largest medical library): <br /> “If I read two journal articles every night, at the end of a year I’d be 400 years behind.” <br /> ~ Dr. Donald Lindberg, <br /> Director, National Library of Medicine (1984-) <br /> <br /> 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.” <br /> <br /> http://epatientdave.com/2012/10/18/see-you-in-the-library.-yes-that-library./#.UUuJ4nw4VEo
  • We’ve touched the lives of thousands, directly: <br /> Those who connect via social media today. <br /> And those that have benefited offline as a consequence of those connections. <br /> <br /> Example: <br /> DHF mobilizes and rallies communities through our Big Blue Test program, <br /> to experience the impact that small changes can have on their health. <br /> <br /> In the Big Blue Test, we encourage people with diabetes to test their blood sugar, <br /> exercise for as little as 14-20 minutes, test again and share their results through the Blue social media platform (web, apps). <br /> People without diabetes are equally encouraged to join (without testing ,of course!) <br /> <br /> When people log a Big Blue Test, <br /> Those with diabetes see on average a 16% drop in blood sugars. <br /> A donation is made on their behalf to help people with diabetes in need, living in underserved areas. <br /> <br /> Since 2009, 60,000+ people have done the Big Blue Test. As of today, over $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. <br /> <br /> This is an example of what happens when people with diabetes and their loved ones connect with their peers, and become engaged beyond their self-management… lives can be changed forever. <br />
  • Another example of the impact of an engaged community of people touched by diabetes: <br /> Spare a Rose, Save a Child: nearly $30,000 raised in support of LFAC, giving almost 500 children with type 1 diabetes in need a year of life!
  • I hope by now I have given you a sense of the potential that connecting people with diabetes with their peers has in terms of causing a positive change in their lives and the communities around them. <br /> <br /> Now, besides TuDiabetes (in English) and EsTuDiabetes (in Spanish), how do connections between people with diabetes happen in social media?
  • Since 2000-2002, the number of blogs in the DOC has grown exponentially. <br /> <br /> Here are some of the best known. <br /> <br /> Through the DIabetesAdvocates.org web site you have an entry point to hundreds more blogs on a variety of topics that you may have never heard of before.
  • Who here is on Facebook? (show of hands) <br /> <br /> Although there are 26+ million people with diabetes in the US, only short of 5 million publicly say they “like” diabetes on Facebook. <br /> <br /> Interactions on Facebook (much like on TuDiabetes and EsTuDiabetes) happen on a very personal level (via friends), through Groups assembled around common interests or geographical proximity, or through people Liking pages on Facebook.
  • Who here is on Twitter? (show of hands) <br /> <br /> Every Wednesday night, dozens of people engage for a weekly chat about diabetes on Twitter using the #DSMA hashtag. <br /> <br /> The rest of the week, it’s a hashtag that people revolve around for diabetes discussion. <br /> <br /> Other hashtags that help aggregate conversations around diabetes can be seen on the slide. <br /> <br /> I am going to let Bennet speak to the last two of the hashtags: #SpareaRose and #StripSafely
  • A majority of the conversations in the DOC are focused on the issues that relate to the realities of individuals’ daily lives and how they deal with the effects of diabetes. This leads to an emphasis on the category characterized as ‘Quality of Life/Education.’ Within this category, the most discussed issues are: <br /> ‹  Personal stories—I struggled today/I learned this/I overcame something <br /> ‹  Food—I can/can’t eat this, this is an awesome dessert <br /> ‹  Tech/Devices experiences and use <br /> ‹  Meds and how they affect quality of life <br /> ‹  Personal event experiences <br /> ‹  And occasionally, meta-analysis of the way certain organizations interact with people with diabetes/the online community <br /> <br /> These conversations about quality of life and daily experiences can be the foundation upon which community is built. They offer important companionship, encouragement and information to others online. As with many chronic diseases, there exists the dichotomy between Cure vs. Care approaches. The overwhelming popularity of Quality of Life conversations can be frustrating to some activists who have strong support systems in place because they are not directly focused on creating change through policy or research. However, the popularity of these conversations presents an important lesson: activating the DOC on a broad scale on any advocacy priority will be easiest if the appeal ties directly to people’s daily lives. By using one of the issues above as a framework for presenting a policy goal, you speak directly to what people clearly care the most about and with which they already identify. <br /> <br /> Another lesson to be learned from analysis of DOC conversation lies in what is not talked about. There are clear gaps in conversation and action where the diabetes community can help fill a void: <br /> ‹ Type 2 diabetes ‹ Reimbursement ‹ Regulatory issues
  • Spare a rose was “retail” philanthropy. Small dollar support for a cause devein by desire to help. Sets as an important motivator altruism. It gave people a chance to help. <br /> StripSafely used the same process of Key Opinion Leaders in social media to drive a grass roots advocacy process, to get PWD to act. <br /> Wen site, images, blog post twitter excitement, clear calls to action. <br />
  • July 1, 2013. StripSafely was a deck of business cards and lapel pins. <br /> Within weeks FDA was on the phone call to talk with the organizers. <br /> Set 9 DTS Meeting <br /> November FDA has StripSafely in their slide decks <br /> January FDA announces meter draft guidance <br /> March FDA host webinar with StripSafley 426 people register, way exceeding FDA expectations <br /> May 7 Dockets on meter close with 556 comments <br /> <br /> How? <br />
  • It is easier to steal a good idea than have one. I pilfered heavily from <br /> Not going into the Marvelous details but LEADERSHIP and effort to get ATTENTION with Twitter and blogs.
  • Attention through twitter. <br /> 3 of those top 6 are Manny.
  • ATTENTION, LEADERSHIP, ACCOUNTABILITY <br /> One message. Lots of times.
  • Targeted with a simple tool <br /> Find you guy, sadly most are still guys and the look a lot like me, old white guys but I digress. <br /> Click to tweet a programed message <br /> Click to tweet. <br /> <br /> Who has a smart phone and twitter? <br />
  • No good game show ends without giving a parting gift of the home game <br /> <br /> Try it now
  • Again this summer! <br />
  • A path toward greater focus, inclusion and impact. <br /> <br /> <br /> With support from the Helmsley Trust, we hired a firm to survey the landscape: opps to collaborate, leaders/gaps. <br /> <br /> To develop an effective road map for a new path forward HCM reviewed and analyzed: <br /> ‹ advocacy strategies and policy priorities of over 60 public and private diabetes stakeholder organizations; <br /> ‹ over 20 pieces of diabetes-related legislation and policy initiatives; <br /> ‹ the online activity and conversations of over 100 diabetes-related blogs and websites; <br /> ‹ activities of over 10 federal agencies; <br /> ‹ successful patient-driven advocacy efforts across the patient community, including HIV/AIDS, breast cancer and spinal cord injury. <br /> A detailed policy map was created from this analysis in which the level of engagement on policy areas by 33 key private and public stakeholder groups was characterized. A SWOT analysis of the public and private stakeholder community was also conducted. <br /> <br />
  • We will be presenting the roadmap to the greater community this summer, as part of a key event we invite you to join us for, Diabetes Advocates Masterlab. <br /> <br /> As we get ready for this rollout, we will be talking with advocacy and leadership at AADE in the coming weeks too, in order to share the details and formalize opportunities for partnering in ways that positively impact the lives of many more PWD, increasing access <br /> <br /> Access to support and information, resources, technology, research, services, stakeholders, regulators and policymakers. ACCESS can be the central concept around which the community can come together; around which strategies can be developed and implemented to reach those currently left out; and around which policies and regulations can be impacted to improve the lives of all people with diabetes. <br />

The value of social media for diabetes advocacy The value of social media for diabetes advocacy Presentation Transcript

  • The Value of Social Media in Diabetes Advocacy Bennet Dunlap @BadShoe, @StripSafely Manny Hernandez @AskManny, @DiabetesHF
  • Who are these guys??
  • offering, getting support
  • http://epatientdave.com/2012/10/18/see-you-in-the-library.-yes-that-library increasing knowledge
  • making a difference http://bigbluetest.org
  • Blogs…
  • People who “like” diabetes 230,000 4,800,000 in the US alone! 0 1,000,000 2,000,000 3,000,000 4,000,000 5,000,000 6,000,000 2011 2014 … on Facebook (nobody really LIKES diabetes!)
  • Wednesdays 8 pm Central • #DSMA • #DOC • #diabetes • #dblog • #BGnow • #T1D • #SpareaRose • #StripSafely
  • Diabetes Social Media conversations
  • Giving to Advocacy
  • Social Media Activism • July ’13 Created • FDA Attention • Sept 9 DTS • Nov on FDA Slides • FDA Webinar • 550 Comments to docket.
  • How? • Attention • Knowledge & Solutions • Community • Accountability • Leadership • Google “Back to Basics HIV”
  • Attention Through Twitter
  • Not just any Tweet • Targeted • @US_FDA • Member of Congress • Made easy – Find your rep – Click based activism
  • Targeted Tweets
  • StripSafely.com/AADE-tweet Parting Gift: .@(CongressMember) Please support Access to Quality Diabetes Education HR1274- S945 @AADEdiabetes #DiabetesEd4All http://ow.ly/vmi5L
  • Connecting with partners • Sessions @ last 3 AADE conferences: • Champions: – Hope Warshaw – Deborah Greenwood – Chuck, Ruth, James • Today!
  • Diabetes Advocacy Realities Not enough engaged advocates Uncoordinated silos Patient voice, chronically absent Advocacy leadership gaps
  • Diabetes Advocacy Roadmap A path toward greater focus, inclusion and impact
  • Approach
  • July 2, 2014: in Orlando Details: http://DiabetesAdvocates.org/MasterLab
  • Our Stories + Social Media = ACCESS!
  • Bennet : @BadShoe, @StripSafely Manny :@AskManny, @DiabetesHF Thank you!