Social Media for Diabetes: Step Up to the Genius Bar

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A Special Course delivered at the AADE 2013 annual conference, Tuesday, August 6, 2013.

PRESENTERS:
* David Edelman, Diabetes Daily (@DavidTalk, @DiabetesDaily)
* Manny Hernandez, Diabetes Hands Foundation (@AskManny, @DiabetesHF)
* Amy Tenderich, MA, DiabetesMine.com (@AmyDBMine, @DiabetesMine)
* Hope Warshaw, MMSc, RD, CDE, BC-ADM, Hope Warshaw Associates, LLC (@HopeWarshaw)

Co-Facilitators during the Genius Bar segment:
* Bennet Dunlap (@badshoe)
* Mila Ferrer, Jimmy Ferrer (@Dulce_Guerrero)
* Brian Cohen
* Catherine Price (@Catherine_Price)
* Deborah Greenwood (@DebGreenwood)
* Dominika Murphy (@DominikaMPH)
* Jill Weisenberger (@nutritionjill)

With the rise of social media, persons with diabetes are increasingly engaging online. It's time for more diabetes educators to step up their social media skills and engagement — for job security. Don't be left behind! Join our panel of social media experts to learn the latest about social media platforms and best practices for engagement. Determine social media goals through a self-assessment process and hands-on help.

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  • AMY-Welcome-Reminder about sheet: complete it, turn it in (Deb, Jill are going around collecting them)-Elaborate a bit on the “Social Media Explained” visual
  • AMYThank you, Patti Geil(pronounced as Kyle)
  • AMYAt the end of the genius bar section, we’d love to have a Twitter-sized update from each table…
  • Professional value you can get out of SM.
  • A nonprofit that seeks to understand, connect and energize the millions of people living with diabetes, through programs such as TuDiabetes.org and the Big Blue Test.
  • If there is a union to report on, I will spend the next few minutes walking you through it
  • Social Media: Benefits FOR PATIENTS
  • Dr. Donald Lindberg, Director of the National Library of Medicine (the world’s largest medical library):“If I read two journal articles every night, at the end of a year I’d be 400 years behind.”~ Dr. Donald Lindberg,Director, National Library of Medicine (1984-) 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
  • We’ve touched the lives of thousands, directly: Those who connect via social media today.And those that have benefited offline as a consequence of those connections.
  • I don’t think I need to beat the dead horse about the increased incidence and cost of diabetes in the US.The ADA noted that there are now 25.8 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). 
  • We spend more money on diabetes every year than the average annual cost of the global war on terror (according to the Pentagon).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 revenue of Microsoft + Apple for 2012.The total GDP of Israel for 2012.
  • There’s several more communities available.
  • The idea of Diabetes Blog Week is that bloggers sign up to post about a set topic each day for a week. This way, readers can jump around the D-Blog Community and get a plethora of different perspective on a single topic.
  • Perspectives from advocates, patients, industry, other nonprofits
  • The state of Diabetes Social Media is strong and growing stronger, but we need to do more.WE NEED YOU!
  • Am I engaged online – yes! Come connect with me on twitter, like me on my Facebook like page or read my blog at hopewarshaw.com.
  • For professionals, social media is a tool. Know your personal goals so you can maximize your effectiveness.Social media masters aren’t ranked by time spent engaged, but by the impact of their engagements.
  • Trey Ratcliff is a very influential person in the realm of social media:author, blogger, and photographer. People connect on a professional and a personal level.
  • Batman theater shooting.Outsourced PR firm from overseas diving into a conversation they don’t understand. On a more relevant note, understand the norms of the communities in which you are participating. Are you allowed to self-promote?How does the community feel about medical professionals?
  • Do you find your own posts interesting?DiabetesMine litmus test:Is it informative and entertaining?Learn from those you respect. A little universalhumor can go a long way.Consider running your posts by others for feedback, especially when getting started. But don’t be afraid to experiment.
  • Self-Promotion: Follow the 80/20 Rule
  • How to’s: negative how to’s do 5x better than positive ones.
  • Learn what DOESN’T workAvoid minefields:Politics SarcasmCriticisms (they are more likely to respond – and not happily – than you think)
  • Be sensitive to your audience and lean to avoid the common minefields. At the same time, make sure to have an exploratory and experimental mindset.(Typically) social media can be very forgiving:it moves extremely quickly and individual posts are quickly forgotten. But sometimes there are problems.Amy story?What’s appropriate? Pretend you are talking to a group of 20 patients and colleagues. You want an intimate yet professional feel.
  • Orientation
  • Social Media for Diabetes: Step Up to the Genius Bar

    1. 1. Social Media for Diabetes: Step Up to the Genius Bar
    2. 2. To Patti Geil, RD, CDE, AADE 2013 Annual Meeting Chair! http://www.flickr.com/photos/jenosaur/4051305996/
    3. 3. Schedule • 1:00 – Introduction • 1:15 – Presentation • 2:30 – Break, table assignments • 2:45 – Genius Bar - this is you! • 4:00 – Up and Coming • 4:15 – Q&A
    4. 4. Amy Tenderich Editor-in-Chief of DiabetesMine.com www.diabetesmine.com One of the world’s Top 20 Health Blogs Diabetes advocate, Book author @DiabetesMine @AmyDBMine Facebook.com/DiabetesMine
    5. 5. Welcome! • Twitter Hashtag – #AADE13GENIUS • So… Why Are You Here?
    6. 6. What Are Your Social Media Goals?
    7. 7. Three Social Media “Buckets” – Patient Social Media (to support your patients) - what are patientsdoing online and why does it matter? Your Provider SM Presence - engaging with your patients online Professional Development - your online reputation/resume/peer networking/business opportunities – –
    8. 8. Technology Adds Value! • More Tools to Succeed • Access to a Wealth of Data = More Proactive Diabetes Care… for you and your patients!
    9. 9. Manny Hernandez Diabetes Advocate President, Diabetes Hands Foundation www.DiabetesHandsFoundation.org Social Strategy Consultant @askmanny @diabetesHF
    10. 10. STATE OF THE UNION
    11. 11. offering, getting support
    12. 12. http://epatientdave.com/2012/10/18/see-you-in-the-library.-yes-that-library increasing knowledge
    13. 13. making a difference http://bigbluetest.org
    14. 14. 25.8 0 5 10 15 20 25 30 1997 2002 2007 2012 Millions of people (Dx with diabetes) in the US http://www.diabetes.org/for-media/2013/annual-costs-of-diabetes-2013.html http://www.cdc.gov/media/pressrel/2010/r101022.html “2050: 1 in 3 US adults could have diabetes”
    15. 15. Cost of diabetes in the US $245 $0 $50 $100 $150 $200 $250 $300 1997 2002 2007 2012 US$ Billions $245 billion = GDP (2012) = Combined revenue (2012) http://www.diabetes.org/for-media/2013/annual-costs-of-diabetes-2013.html
    16. 16. People on Facebook who “like” diabetes mellitus 230,000 2,416,060 in the US alone! 0 500,000 1,000,000 1,500,000 2,000,000 2,500,000 3,000,000 Likes 2011 2013
    17. 17. Registered members in 3 online communities +66% 0 20,000 40,000 60,000 80,000 100,000 120,000 140,000 160,000 180,000 Members (DiabetesDaily.com, TuDiabetes.org, EsTuDiabetes.org) 2011 2013
    18. 18. Participants in Diabetes Blog Week +48% 0 50 100 150 200 250 Blogs 2010 2013
    19. 19. Last 12 months: a crowdsourced view • #DSMA goes international: –#GBDOC: Wednesdays, 9pm GMT –#OzDOC: Tuesday 8.30 AEDT http://www.tudiabetes.org/profiles/blogs/the-state-of-the-diabetes-union
    20. 20. Last 12 months: a crowdsourced view • Google Hangout enabled: – 60+ Live Interviews on TuDiabetes/EsTuDiabetes – Diabetes Hope Conference http://www.tudiabetes.org/profiles/blogs/the-state-of-the-diabetes-union
    21. 21. Last 12 months: a crowdsourced view • DOC still disproportionately T1D – We need to find ways of being more inclusive and supportive of the majority of PWD who have T2. – The Type 2 Experience: • http://thetype2experience.com/ http://www.tudiabetes.org/profiles/blogs/the-state-of-the-diabetes-union
    22. 22. Last 12 months: a crowdsourced view • Self correction is key: – To earn respect from medical professionals – To address misinformation from patients – To identify and reject quackery http://diabetesadvocates.org
    23. 23. Website: hopewarshaw.com Facebook(like): eathealthylivewell Twitter: @hopewarshaw Blog: hopewarshaw.com/blog
    24. 24. PATIENTS AND SOCIAL MEDIA: THE RESEARCH
    25. 25. “Humans have fundamental need for support and social connections.” Edwin Fisher, PhD, Global Director, Professor UNC School of Public Health peersforprogress.org
    26. 26. Value of Online e-patient Communities • Concepts IDed by PWD and HCPs fit broadly within definition of peer support.1 • Plus… – Ongoing social and emotional support – Feeling supported, giving support – Self reflection – Connection and interaction with peers – Sense of community 1. Gilbert, K., Dodson, S., Gill, M. & McKenzie, R. Online communities are valued by people with type 1 diabetes for peer support: How well do health professionals understand this? Diabetes Spectrum. 2012;25(3), 180-191.
    27. 27. Is There Proof (aka research) Social Media Improves Outcomes? When PWD Engage in Social Media do they: • Have better metabolic control? • Experience fewer acute, chronic complications? • Feel more supported? Less isolated? • Experience less depression and more emotional wellbeing? http://www.npr.org/blogs/health/2012/12/03/16624 1115/social-media-helps-diabetes-patients-and- drugmakers-connect (12/3/12) Jury is still out, but research is being conducted and is accumulating.
    28. 28. We’ve Entered Era of e-patient • Definition electronic patient: – Patients/caregivers equipped, enabled, empowered, and engaged in their health care due to availability of Internet health info: “Internet has revolutionized communication, access to information, and knowledge… [An] outcome…is democratization of health knowledge: removing it from the sole purview of clinicians to the shared purview of consumers.” – “Peer-to-peer healthcare is a way for people to do what they have always done – lend a hand, lend an ear, lend advice – but at internet speed and at internet scale.”1 – ACA IDs patient engagement as an integral component of quality in ACOs and PCMH2,3 1. Fox, Susannah. “Medicine 2.0: Peer-to-peer healthcare.” www.pewinternet.org/. 18 Sept. 2011. Web. 10 Apr. 2012. 2. James J: Patient engagement. Health Affairs. 2013 (February). http://www.healthaffairs.org/healthpolicybriefs/brief.php?brief_id=86 (Summary of findings from February 2013 issue of Health Affairs.) 3. U.S. Department of Health and Human Services. Affordable Care Act to improve quality of care for people with Medicare. 2011. Available at: http://www.hhs.gov/news/press/2011pres/03/20110331a.html.)
    29. 29. Areas of e-patient Research: General, Diabetes-specific Two buckets: • e-patient/PWD to e-patient/PWD – Informal: Ex diabeticconnect.com, Twitter/Twitter chats – Formal: peer support program • e-patient/PWD to HCP – Individual’s HCPs (using technology) – HCP as online coach for program – General HCP content expert online
    30. 30. A Bit of Research IS Published • Patients made more informed treatment decisions, managed symptoms more effectively, and coped with side effects of treatments by participating in the patientslikeme.com website.1 • Participating in an online support group resulted in improvements in medical decision making, personal empowerment, and positive behavioral outcomes.2 1. Wicks P, Massagli M, Frost J, et al. Sharing health data for better outcomes on PatientsLikeMe. J Med Internet Res 2008;12(2). Available at: http://www.jmir.org/2010/2/e19/. 2. Barak A, Boniel-Nissim M, Suler J. Fostering empowerment in online support groups. Computers in Human Behavior 2008; 24:1867-83.
    31. 31. Further Research on e-patient “A newly developing partnership may open the doors to a broader concept of wisdom as well, one in which the patient is not simply a consumer of the clinician’s wisdom but in which collective wisdom is enhanced by an exchange of knowledge. Further study on both the safety and quality of the e-patient experience is needed, as well as evidence of improved health outcomes resulting from e-patient engagement.”1 1. Gee PM, Greenwood D. et al. Exploration of the e-patient phenomenon in nursing informatics. Nursing Outlook. 2012; 60(4). AADE Session: The e-Patient Revolution, Personal Health Records and Diabetes Self-Management Support, Deborah Greenwood and Perry Gee, Date: Wednesday, 2:00 PM - 3:30 PM, Rm: 118
    32. 32. DIABETES SOCIAL MEDIA: PROFESSIONAL DEVELOPMENT
    33. 33. Develop Your Profession or Practice Online • Learn • Connect • Share and Grow…
    34. 34. Learn Online… Skills, Knowledge: Webinars/lectures-a-plenty • free or fee, realtime or on demand, CE or non CE) – Associations: AADE, DCE, SurroundHealth – Corporate or Trade association sponsored – Interviews: diabetesmedtalk
    35. 35. Connect and Share Online… • Member-based organizations: – AADE: myAADEnetwork, member blogs – DCE list serv • Diabetes/HCP professional communities: – PRESENTdiabetes.com (eTalk) • Social media: – Twitter (Wed night RDchat) (@AADEdiabetes) – Facebook with colleagues, associations – LinkedIn with individuals, join groups – Google+
    36. 36. Tool/Handout: Connect YOUR Clients to the DOC Web version with links, downloadable/printable version available at: http://www.hopewarshaw.com/connectdiabetes
    37. 37. Grow…Practice, Business, Career Online • Promote your practice, org • Promote, sell your products • Seek career opportunities
    38. 38. ENGAGEMENT GUIDELINES: DO’S & DON’TS
    39. 39. David Edelman Co-Founder, Diabetes Daily diabetesdaily.com facebook.com/diabetesdaily Email Me! david@diabetesdaily.com
    40. 40. #1: Focus on Your Goal
    41. 41. #2: Be Authentic • Use your name • Use your face, not a logo • Speak colloquially, not like a newspaper or journal • Smile
    42. 42. #3: Observe Before Participating
    43. 43. #4: Don’t Be Boring!
    44. 44. #5: Get Smart About Self-Promotion • Be a giver, not a taker • People like to promote those who promote them. • Links, retweets, and kind words are inexpensive but enormously valuable. Everyone up here has groomed supporters by helping their peers become successful.
    45. 45. #6: Be Consistent • Post often, but not too often. • Use auto-scheduling tools like Hootsuite (Twitter/Facebook/Google+), Scheduled Posts (WordPress), Facebook Scheduled Posts to improve consistency. “Consistency is far better than rare moments of greatness” - Scott Ginsberg, Author
    46. 46. #7: Learn What Works • How Tos • Top 10 Lists • Motivational quotes • Affirmations • Little known facts • Highlighting Heroes • Good v Evil
    47. 47. #8: Respect Ownership • Always give credit to the source of your ideas. • Don’t quote more than 2 or 3 paragraphs without making it a new work through significant commentary. This is the respectful, moral and legal approach. 1. Quote a paragraph 2. Add your own commentary 3. Return to Step 1
    48. 48. #9: Save Time, Re-Purpose Content • Write a great article with 10 steps to better diabetes management? Each step can become a Facebook post or tweet. • Always be on the look out for facts, anecdotes and experiences that excite you. Jot down notes and quickly add to your schedule post queue.
    49. 49. #10: Monitor What People Say About You • Use Google Alerts to get emailed when someone writes about you or one of your social media channels. – Thank those that promote you. – Intervene when someone says something inaccurate. – Get insight into how people view you online.
    50. 50. #11: Experiment... And Learn!
    51. 51. DE’S USING SOCIAL MEDIA
    52. 52. Build Your Program/Practice • Kit McKinney, RD, CDE • G.E.T. Diabetes Education, LLC East TX • Why? – Gets biz name out – Broad reach, nearly no cost – Quick, easy, do in my “spare time” – Fits demographics of my clients (older), they use Facebook
    53. 53. Promote Products and Services • Gary Scheiner, MS, CDE (aka Diabetes Educator of 2013) • Integrated Diabetes Services Wynnewood, PA • Business owner, consulting, entrepreneur • Why? – Learn: stay abreast of research and technology happenings – Engage clients: more are web savvy and turn to Internet for info – Provide: be a resource for accurate/appropriate info – Market: supply content to blogs and websites to increase exposure, credibility and extend reach beyond your zip code
    54. 54. Conduct Research • Michelle Litchman, NP – Clinician, Salt Lake City, UT • Why? – Social media enthusiast and e- patient supporter – Working on PhD in Nursing • Thesis:“A Multidimensional Analysis of Peer-to-Peer Health and Apomediation Theory in a Diabetes Online Community”
    55. 55. Be Entrepreneurial • Jill Weisenberger, RD, CDE • Jill Weisenberger Health Communications, LLC • Freelance writer, author, consultant, entr epreneur • Why? • Build reputation, professional brand • Promote accurate diabetes/ nutrition info • Be an advocate for PWD
    56. 56. ETHICAL AND LEGAL ISSUES
    57. 57. Your Institution/Employer? WHOA, NO or GO? • We asked: If you work for an institution or employer, do they have concerns about you/your program engaging in social media? – If Yes, concerns/hurdles? • Patient Privacy, confidentiality - HIPPA • Risks for the institution/employer • Too time consuming for the ROI • Lack of resources (human or material) • You responded: – YES, Patient Privacy, confidentiality - HIPPA
    58. 58. Mayo Clinic’s 12 Word Social Media Policy Don’t Lie, Don’t Pry, Don’t Cheat, Can’t Delete Don’t Steal, Don’t Reveal
    59. 59. Should You Have Ethical and Legal Concerns about Engaging in Social Media? Should these STOP YOU from engaging?
    60. 60. Who Has Weighed In?* http://womma.org www.ncsbn.org *See handout with references
    61. 61. Ethical & Legal Guidance* • Look to your professional associations’ code of ethics – general, specific to social media • Act ethically and within legal bounds of professional practice – Share research-based content only – Don’t plagiarize without attribution – Don’t “air dirty laundry” about fellow HCPs, associations • Be transparent/disclose endorsements, sponsorship, advertising – Follow professional association, FTC, other guidance • Respect people’s/patient’s privacy, confidentiality, think HIPPA – Don’t share: info about patients, encounters; no disparaging remarks; no photos with patients *See handout with references
    62. 62. Codes and Badges for Ethical Practice in Social Media to Display http://www.rds4disclosure.org/ http://www.hon.ch/med.html (Health on the Net Foundation) http://www.blogwithintegrity.com/
    63. 63. Proceed with Caution and Stay Up-to-Date on Rules of Engagement
    64. 64. Get Help and Learn More • Challenge = TIME!!! (Time = $$$) – to learn, to do • Advice: – Start with 1 platform that best fits needs, goals, resources (time, money) – Jump in, gain confidence and mastery • Get a geek to teach or do – Intern or new grad in your profession, social media or computer training program – Teenager/20-something – yours, neighbor, friend’s • Learn skills online: – http://www.lynda.com/ – Others?
    65. 65. UP AND COMING…
    66. 66. Platforms to Watch • Pinterest – huge online “Pinboard” • Instagram – photo twitter service, acquired by Facebook April 2012 • Twitter Vine – share bitesize video, 6 sec max • Google+ – social networking via “circles”
    67. 67. Visual, Addictive…
    68. 68. Pinterest
    69. 69. • Add info here
    70. 70. Mobile Everything
    71. 71. CONNECTING VIA APPS
    72. 72. Diabetes Logging/Coaching Apps +
    73. 73. Learning Apps
    74. 74. Lifestyle Apps MyFitnessPal Lose It!
    75. 75. Action > Rewards! • 4x/day logbook • Motivation, education • Cash for iTunes!
    76. 76. KEEPING UP?
    77. 77. How to Keep Up… 1. Remain calm 2. Listen, listen, listen 3. Search and ask 4. Make changes incrementally
    78. 78. Search the Web for “How-To’s” • Google terms like “tools” and “tutorial” • Medscape has a Social Media Primer for HC Professionals • On YOUTUBE: – HootSuite Beginners Tutorial – Top Twitter Tools Exposed & Explained at Lightning Speed!
    79. 79. Future Trends
    80. 80. “Social Technology Powered Care” • Apps that check in with patients • Shared medical records accessible from anywhere • Virtual “meeting places” for patients & providers
    81. 81. New Business Models?
    82. 82. Social Media >> Collaborative Care • Increased reach & impact (remote areas, from home) • Easy shared access to latest clinical guidelines & research • Better communication/ coordination: Interface with family members, other providers
    83. 83. Further Reading • “Is There a Role for Social Technologies in Collaborative Healthcare?” (American Psychological Association, 2011) • “Social Media ‘Likes’ Healthcare: From Marketing to Social Business” (PwC Health Research Institute, 2012)
    84. 84. Assess Your Own Realistic Goals Three simple questions: • What do you hope to achieve with social media? – Priorities? • How much time do you want to/can you commit? – Per day, week, month? – Think when? • What’s your timeframe? – Specific to each goal?
    85. 85. Q&A (AND THANK YOU!!)

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