Weighing in on Social Media Hands-On Social Media Workshop

1. ADEU Update Pre-Conference Workshop November 4, 2009 Presented by Nancy Lombardo, MLS; Todd Vandenbark, MLS/TM; Ginny Burns, CDE, RN, MEd; Grant Sunada, MPH Weighing in on Social MediaHands-On Social Media Workshop

2. Objectives Be able to define “Web 2.0” technologies and describe their characteristics Learn how to apply relevant Web 2.0 technologies Practice using some of the technologies Discuss ways to incorporate Web 2.0 into your professional life Have fun!

3. Overview Web 2.0 definitions What is Social Software? • What is it good for? Web 2.0 and Diabetes • Our conundrum • How to start? Social Networking: Listening, Connecting, Creating • Listening: RSS – Hands On • Connecting • “Micro-blogging” (Twitter) – Hands On • Facebook – Hands On • Creating: Blogs – Hands On Questions Conclusions

5. Diabetes in Utah More than 120,000 Utah adults (6%) have been diagnosed with diabetes1 13.3% of Utah adults with diabetes are uninsured2 • Utah Health Status Survey (2007-2008). Office of Public Health Data. Utah Department of Health, Salt Lake City, UT • Utah BRFSS 2005-2008 5

6. Why in Utah Minorities have risen from 1.9% (1960) to 17.7% (2007)1 Disparities exist in age-adjusted percentages of Utahns with diabetes by race & ethnicity2 American Indian Pacific Islander African American Non-Hispanic White Asian American Hispanic/Latino 6 • Pamela S. Perlich, http://health.utah.gov/cmh/data/UtahDemographicTransformation.pdf • Diabetes in Utah (2008), http://health.utah.gov/diabetes/pdf/fctsandfig/diabetesinutah_book_May08.pdf

7. Our society is changing … so is the World Wide Web

8. Web 2.0 Definitions

9. Web 2.0 Web 1.0 Static Lecture Expert-Model Interactive Conversation Consumer [Patient]-Model Public wants to have all the information • From multiple sources • In ways they can understand • From experts AND peers • When they want it 9 • http://www.brochure2blog.org/

10. What Is Web 2.0? Originally coined by Tim O’Reilly of O’Reilly Publishing in 2003 Classic article: • http://www.oreillynet.com/pub/a/oreilly/tim/news/2005/09/30/what-is-web-20.html • User participation • Harnessing the collective intelligence • Design for "hackability" and remixability

11. Wikipedia Definition “2nd generation Internet services that let people collaborate and share information online in previously unavailable ways” (wikipedia) • Blogs, wikis, photo / video sharing sites, social networking sites • Online web services that share data (“mashups”)

12. Two Sides of Web 2.0 Two-Way Communication (“Social Software”) • Creates conversations between people • Examples • Blogs • Wikis • Photo/video sharing • Social networks Web Services • Software online • Google Tools • Protopage.com/websoft • Mashups • Photos overlaid on Google Earth • Embed services • Google custom search engine, Google calendar, etc.

13. Two Sides of Web 2.0 With social media, people communicate with each other. With web services, machines communicate by sharing data.

14. What is Social Software?

15. Whoa, but what is it good for? Sharing with others Creating knowledge bases Making connections Building communities Engaging colleagues Empowering patients All of these things and more!

16. The “Digital Divide” 16

17. A Possible Bridge:Mobile Access • ~32% of all adults having ever gone online with a handheld (2009): • 48% of African Americans • 47% of English-speaking Hispanics • 53% of those between the ages of 18 and 29 • 39% of college graduates • 28% of white Americans http://www.pewinternet.org/Reports/2009/12-Wireless-Internet-Use.aspx

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19. Generation Gap Older generations use the Internet for • information searches, • emailing, and • buying products (2009). More likely than younger generations to look online for health information. Health questions drive those age 73 and older to the internet just as frequently as they drive Generation Y users, outpacing teens by a significant margin

20. “Get health info”

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22. Web 2.0 and Diabetes 8 in 10 internet users (regardless of health status) look online for health info1 • AKA e-Patients 86% of internet users living with a disability or chronic illnesshave looked online for health information2 • compared with 79% of internet users with no chronic conditions Just half of adults with chronic conditions use the internet2 • But once online, they are avid consumers of health information 22 • http://www.pewinternet.org/trends/User_Demo_Jan_2009.htm • S. Fox, http://www.pewinternet.org/Reports/2007/Epatients-With-a-Disability-or-Chronic-Disease.aspx • S. Fox, http://www.pewinternet.org/Reports/2008/The-Engaged-Epatient-Population.aspx

23. Web 2.0 and Diabetes (cont.) E-patients living with a chronic condition are more likely than others to say that online info: • Affects decisions about how to treat an illness • Prompts new questions of a doctor • Changes the way they cope with a chronic condition or manage pain1 However, they feel frustrated by a lack of info or an inability to find what they are looking for 23 • S. Fox, http://www.pewinternet.org/Reports/2007/Epatients-With-a-Disability-or-Chronic-Disease.aspx • S. Fox, http://e-patients.net/archives/2009/01/doing-our-best-to-blow-your-minds-emerging-trends-in-chronic-disease-care.html

24. Our Conundrum Most people under age 40 are fully engaged with “social media” • but not yet dealing with chronic illness Most people over 60 are starting to face chronic conditions • but are not participating in social media This is changing, but what do we do??? 24 • S. Fox, E-patients With a Disability or Chronic Disease, http://www.pewinternet.org/trends.asp

25. Provide the Best InformationUsing the Best Communication Methods Don’t just tell people what to do • Try to empower them to be better consumers of health information Make it easier to distinguish good information from bad • Rise above junk-info • User-generated content is here to stay • Real risk is for diabetes professionals to be quiet Tailor content and delivery to the audience • Encourage their participation • Promote dialogue • Enable people to tell their personal stories 25 • http://www.brochure2blog.org/

26. How to proceed or even start? People generally don’t believe that the Internet is a panacea1 • But it is empowering patients like never before2 What do you do now? • Listen • Connect • Create 26 S. Fox, http://www.pewinternet.org/Reports/2008/The-Engaged-Epatient-Population.aspx e-Patients: How they can help us heal healthcare, http://www.acor.org/epatientswiki/index.php/

27. BLOG Creating Connecting Listening Fooducate: 3 steps to embrace social media for RDs #FNCE2009 http://yfrog.com/0r42459875j12:44 PM Oct 19th from Twitterrific http://twitter.com/fooducate/statuses/4998762906

28. Developing a strategy: Identify Target Audiences, Goals and Mediums Starting point – Utah Diabetes Prevention and Control Program • Knew that online resources provided general information about diabetes • Received a lot of requests for more specific, local information 28

29. Forward to Local Expert* Local Diabetes Questions ???? Local Answers 29 * “Local Expert” not necessarily a diabetes expert

30. Identify Target Audiences, Goals & Mediums Goal – Help connect the members of our community who have diabetes • Support each other • Gain a better understanding of our disease • Connect with local resources 30

31. Forward to Local Diabetes Expert Local Diabetes Questions Local Answers Record for Public Reference 31

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33. Addressing a Community Need Gestational patient • High glucose levels • Difficulty getting into a free clinic and sliding-scale fee clinic Calls were made in her behalf Led to a discussion with medical directors 33

34. Improving local resources Patient had Primary Care Network insurance • Had questions about diabetes pump supplies • Called state office but information was confusing for patient and PCN staff Notified State office Arranged for more training for PCN staff members about diabetes products 34

35. Sharing Information & Experiences Hypoglycemia question • Individual had a chance to describe her unique symptoms Sends note back saying it was helpful to understand she was not alone 35

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38. Entrance Keywords • cost of insulin pump utah • carbohydrates lip tingle • colds and flu medication for diabetics • carbohydrate grams for pre diabetes vegetarian • my ears are buzzing help i'm a diebetic • minimed supplies utah • diabetes ideal glucose number • blue cross blue shields of utah diabetic pump coverage • where to purchase a minimed insulin pump in utah • i am a type 1 diabetic..should i exercise when i have a cold • diabetes type 2 grams of carbs for dinner • how many grams of sugar is o.k. on a daily basis for someone with type 2 diabetes • how many grams of carbohydrates are in 1 piece of pumpkin pie • is there a place where i can get a free high blood check in salt lake city, utah • diabetes help utah • program for uncontrolled diabetes • questions to ask on diabetes • i had a glucose level of 104 but my a1c was normal • blocked nose and low glucose levels • gestational diabetes vegetarian menu What did a person type into their search engine to find Ask Ginny? 38

39. Intermountain Healthcare Intranet Improved interactions between • Provider-Patient • Provider-Provider Patient-Patient? • We know that it is powerful 39

40. Think globally, but …what can you do locally? Create a public or private Twitter account • Example from Frankie951 • Option to connect via Internet and/or text messages • Connect with other CDEs • Connect patients together • Limited to 140 characters • Provide links to in-depth information 40 http://www.rikomatic.com/blog/2009/06/twitter-as-an-event-organization-tool-our-experience-with-the-frankie-95-birthday-festival.html

41. Think globally, but …what can you do locally? Create a local diabetes Q&A blog • Try Blogspot, Wordpress or others • Set up to receive questions and comments via e-mail • Patients can also respond to questions • Moves beyond Q&A • Link to Twitter account with TwitterFeed • Use keywords (“meta-tags”) to increase people’s ability to find your blog • Remember to track your web traffic with Google Analytics, Wordpress or others 41

42. Think globally, but …what can you do locally? Join or create a diabetes social network on Facebook.com or Ning.com • Join an existing national or international network • AADE on Facebook • TuDiabetes.com • Connect local support groups • Create a local identity • Local diabetes educators and experienced e-patients become “moderators” 42

43. Next steps for Ask Ginny Converted Ask Ginny to a Blogspot blog Linked blog to Twitter Linked both to a Facebook Page Creation of “Ask Ginny & Friends” • Improved sustainability

44. Next steps for diabetes in Utah Create a tool for diabetes educators and professionals under the working title • Online Family & Community Health Center Use empowerment education model1 to help those affected by diabetes: • Reflect on self-management experiments • Discuss the emotional experience of living with diabetes • Engage in systematic patient-centered goal setting and problem solving • Answer clinical questions and provide culturally tailored education materials 44 Martha M. Funnell, Robin Nwankwo, Mary Lou Gillard, Robert M. Anderson, and Tricia S. Tang. Implementing an Empowerment-Based Diabetes Self-management Education Program. The Diabetes Educator, 2005, 31: 53-61.

45. Next steps for diabetes in Utah Target audience • Uninsured people affected by, or at risk for, diabetes • Those who care for and care about them Reach • Partner with universities to conduct market research • Explore public kiosks, public libraries, ATMs and elementary schools • Utilize text messages, existing media channels and support groups Launch – First Phase – World Diabetes Day (14 November 2009) • The Faces of Diabetes in Utah • Inspired by local girl scout • Current site – http://inspiredbydiabetes.blogspot.com • Future site – http://health.utah.gov/facesofdiabetes 45

46. Social Networking

47. BLOG Creating Connecting Listening Fooducate: 3 steps to embrace social media for RDs #FNCE2009 http://yfrog.com/0r42459875j12:44 PM Oct 19th from Twitterrific http://twitter.com/fooducate/statuses/4998762906

48. Listen, Connect, Create

49. RSS - Listen and Connect Really Simple Syndication • Subscribe to information “feed” • Receive updates automatically “Current Awareness Service” • Automatically receive PubMed searches, journal table of contents or news • New information tailored to your interests • No email overload!

50. The “Old Way” – Web sites