Using “Web 2.0” to Deliver Diabetes Education and Address Local Needs

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Using “Web 2.0” to Deliver Diabetes Education and Address Local Needs

American Association of Diabetes Educators 36th Annual Meeting, August 2009

Ginny Burns* CDE RN MEd, Grant Sunada MPH, Brenda Ralls PhD

*Presenter

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  • Local examples
  • Another change is happening concurrently. As health economist Jane Sarasohn-Kahn writes, health-related social technologies capture “the exchange of health information and personal stories in a way that transcends both medical textbooks and chatting with a friend on the phone – yet offers some of the benefits of both.”
  • Certain demographic groups are more likely than others to look online for information about a specific disease or medical problem. These differences have also changed very little over the past six years.
  • Optional slide
  • It turns out that e-patients’ enthusiasm for social media is not limited to activities related to health. Internet users who have looked online for health information are more likely than non-health seekers to have created or worked on their own blog, read someone else’s blog, used a social network site, used Twitter or another status update service, and to have consulted Wikipedia. Even when controlling for age, education, and other variables, being an e-patient emerges as a significant predictor for other social media engagement. http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information/03-Social-Media-and-Health/3-Epatients-are-more-likely-than-other-internet-users-to-engage-in-social-media.aspx?r=1
  • [In addition] When asked, "Now thinking about all the sources you turn to when you need information or assistance in dealing with health or medical issues, please tell me if you use any of the following sources..." 86% of all adults ask a health professional, such as a doctor. 68% of all adults ask a friend or family member. 57% of all adults use the internet. 54% use books or other printed reference material. 33% contact their insurance provider. 5% use another source not mentioned in the list.  “ Social Life of Health Information”, Susana Fox, Pew Internet
  • About two-thirds of e-patients ages 18-49 have done at least one of the activities listed, compared with one-half of e-patients age 50 and older.  http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information/03-Social-Media-and-Health/ There are signs that change is coming: First, mobile access is on the rise. Those with mobile access to the internet are more likely than those who have tethered access to contribute their comments and reviews to the online conversation about health and health care.  Second, adults between the ages of 18 to 49 are more likely than older adults to participate in social technologies related to health. As younger adults face more health care questions and challenges, they may turn to the tools they have sharpened in other contexts of their lives to gather and share health advice. But in the end, experts remain vital to the health-search and decision-making process. This practice “will not budge” and therefore require designers of any new health care application “to look not ahead, but to look around” in order to see the way forward (John Seely Brown and Paul Duguid, The Social Life of Information. Harvard Business School Press: 2000). http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information/06-Trends-to-Watch/1-Mobile-access-and-generational-shifts-will-each-have-an-effect-on-social-media-and-health-care.aspx?r=1
  • Add – On July 16, the National Institutes of Health and the Wikimedia Foundation, the nonprofit organization that operates the Wikipedia® online encyclopedia, joined forces to make health and science information more accessible and reliable. This collaboration was the first of its kind for both organizations. http://www.nih.gov/news/health/jul2009/od-14.htm
  • Frustrated – Was our Web site really addressing people’s questions? People call in with questions, but we are not doing patient care. Our hands were tied, but we could refer them. Then what though? How do we know what happened to them. There were national, online, diabetes communities, but nothing local.
  • We never dreamed that it would be this big. Ginny knew the system and the educators – who else could help these people navigate the system? Bolster existing networks.
  • Used Web 1.0 technology (e-mail and html) to do Web 2.0 activities.
  • 1 st of 3 examples – Ask Ginny helps identify and address community needs, market and improve local resources, and share information and personal stories
  • Spike during KUTV Ask the Expert Time on page
  • Utah cities and towns are highlighted, many of which are distant and rural communities.
  • CDE becomes moderator Twitter – Microblogging, 140 characters On Twitter: # designates a keyword (or hashtag such as #diabetes) and @ directs the message to someone (such as @AskGinny) Links are usually shortened urls, so you should specify the source of the link: http://www.rikomatic.com/blog/2009/06/twitter-as-an-event-organization-tool-our-experience-with-the-frankie-95-birthday-festival.html Becomes http://bit.ly/3X0jG
  • Try http://www.blogspot.com, http://www.wordpress.com, Linking to Twitter and using Google Analytics are all just options. Only put on your plate as much as you can handle.
  • Ning – Personalize-able Facebook where CDE becomes the moderator Discussions are already happening among CDEs on AADEs Facebook page 10,000~ people “touched by diabetes” are on TuDiabetes.com (which is Ning-based)
  • Created a series of interconnected web sites and applications that are easier to publish to, follow, link to, search for, share, and comment on.
  • Ning – Personalize-able Facebook Moderator – Twitter – Microblogging, 140 characters
  • Using “Web 2.0” to Deliver Diabetes Education and Address Local Needs

    1. 1. Using “Web 2.0” to Deliver Diabetes Education and Address Local Needs American Association of Diabetes Educators 36 th Annual Meeting, August 2009 Ginny Burns CDE RN MEd, Grant Sunada MPH, Brenda Ralls PhD
    2. 2. Outline <ul><li>Develop an interactive diabetes resource </li></ul><ul><li>Describe the Ask Ginny Experience </li></ul><ul><li>Empower diabetes educators through improved interactions </li></ul><ul><li>Brainstorm possible local applications </li></ul>
    3. 3. Why in Utah <ul><li>More than 120,000 Utah adults (6%) have been diagnosed with diabetes 1 </li></ul><ul><li>13.3% of Utah adults with diabetes are uninsured 2 </li></ul><ul><li>Utah Health Status Survey (2007-2008). Office of Public Health Data. Utah Department of Health, Salt Lake City, UT </li></ul><ul><li>Utah BRFSS 2005-2008 </li></ul>
    4. 4. Why in Utah <ul><li>Minorities have risen from 1.9% (1960) to 17.7% (2007) 1 </li></ul><ul><li>Disparities exist in age-adjusted percentages of Utahns with diabetes by race & ethnicity 2 </li></ul><ul><li>Pamela S. Perlich, http://health.utah.gov/cmh/data/UtahDemographicTransformation.pdf </li></ul><ul><li>Diabetes in Utah (2008), http://health.utah.gov/diabetes/pdf/fctsandfig/diabetesinutah_book_May08.pdf </li></ul>American Indian Pacific Islander African American Non-Hispanic White Asian American Hispanic/Latino
    5. 5. Our society is changing … so is the World Wide Web
    6. 6. Web 2.0 <ul><li>Static </li></ul><ul><li>Lecture </li></ul><ul><li>Expert-Model </li></ul><ul><li>Interactive </li></ul><ul><li>Conversation </li></ul><ul><li>Consumer [Patient]-Model </li></ul><ul><li>Public wants to have all the information </li></ul><ul><ul><li>From multiple sources </li></ul></ul><ul><ul><li>In ways they can understand </li></ul></ul><ul><ul><li>From experts AND peers </li></ul></ul><ul><ul><li>When they want it </li></ul></ul>Web 1.0 <ul><li>http://www.brochure2blog.org/ </li></ul>
    7. 7.
    8. 8.
    9. 9.
    10. 10. http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information/
    11. 11. http://www.pewinternet.org/Reports/2009/8-The-Social-Life-of-Health-Information/7-Health-insurance/1-Information-about-health-insurance.aspx?r=1
    12. 12. Web 2.0 introduction <ul><li>8 in 10 internet users (regardless of health status) look online for health info 1 </li></ul><ul><ul><li>AKA e-Patients </li></ul></ul><ul><li>86% of internet users living with a disability or chronic illness have looked online for health information 2 </li></ul><ul><ul><li>compared with 79% of internet users with no chronic conditions </li></ul></ul><ul><li>Just half of adults with chronic conditions use the internet 2 </li></ul><ul><ul><li>But once online, they are avid consumers of health information </li></ul></ul><ul><li>http://www.pewinternet.org/trends/User_Demo_Jan_2009.htm </li></ul><ul><li>S. Fox, http://www.pewinternet.org/Reports/2007/Epatients-With-a-Disability-or-Chronic-Disease.aspx </li></ul><ul><li>S. Fox, http://www.pewinternet.org/Reports/2008/The-Engaged-Epatient-Population.aspx </li></ul>
    13. 13. Web 2.0 introduction <ul><li>E-patients living with a chronic condition are more likely than others to say that online info: </li></ul><ul><ul><li>Affects decisions about how to treat an illness </li></ul></ul><ul><ul><li>Prompts new questions of a doctor </li></ul></ul><ul><ul><li>Changes the way they cope with a chronic condition or manage pain 1 </li></ul></ul><ul><li>However, they feel frustrated by a lack of info or an inability to find what they are looking for </li></ul><ul><li>S. Fox, http://www.pewinternet.org/Reports/2007/Epatients-With-a-Disability-or-Chronic-Disease.aspx </li></ul><ul><li>S. Fox, http://e-patients.net/archives/2009/01/doing-our-best-to-blow-your-minds-emerging-trends-in-chronic-disease-care.html </li></ul>
    14. 14. Our Conundrum <ul><li>Most people under age 40 are fully engaged with “social media” </li></ul><ul><ul><li>but not yet dealing with chronic illness </li></ul></ul><ul><li>Most people over 60 are starting to face chronic conditions </li></ul><ul><ul><li>but are not participating in social media </li></ul></ul><ul><li>What do we do??? </li></ul><ul><li>S. Fox, E-patients With a Disability or Chronic Disease, http:// www.pewinternet.org/trends.asp </li></ul>
    15. 15. Provide the Best Information Using the Best Communication Methods <ul><li>Don’t just tell people what to do </li></ul><ul><ul><li>Try to empower them to be better consumers of health information </li></ul></ul><ul><li>Make it easier to distinguish good information from bad </li></ul><ul><ul><li>Rise above junk-info </li></ul></ul><ul><ul><li>User-generated content is here to stay </li></ul></ul><ul><ul><li>Real risk is for diabetes professionals to be quiet </li></ul></ul><ul><li>Tailor content and delivery to the audience </li></ul><ul><ul><li>Encourage their participation </li></ul></ul><ul><ul><li>Promote dialogue </li></ul></ul><ul><ul><li>Enable people to tell their personal stories </li></ul></ul><ul><li>http://www.brochure2blog.org/ </li></ul>
    16. 16. How to proceed or even start? <ul><li>People generally don’t believe that the Internet is a panacea 1 </li></ul><ul><ul><li>But it is empowering patients like never before 2 </li></ul></ul><ul><li>Where are you now? 3 </li></ul><ul><ul><li>Good: Aware of Web 2.0 applications </li></ul></ul><ul><ul><li>Better: Joining the Web 2.0 conversation as a diabetes professional </li></ul></ul><ul><ul><li>Best: Developing strategic organization- and systems-based approaches to Web 2.0 </li></ul></ul><ul><li>S. Fox, http://www.pewinternet.org/Reports/2008/The-Engaged-Epatient-Population.aspx </li></ul><ul><li>e-Patients: How they can help us heal healthcare, http:// www.acor.org/epatientswiki/index.php / </li></ul><ul><li>http://byumph.blogspot.com/2009/05/return-to-upha-web-20.html </li></ul>
    17. 17. Developing a strategy: Identify Target Audiences, Goals and Mediums <ul><li>Starting point – Utah Diabetes Prevention and Control Program </li></ul><ul><ul><li>Knew that online resources provided general information about diabetes </li></ul></ul><ul><ul><li>Received a lot of requests for more specific, local information </li></ul></ul>
    18. 18. Forward to Local Expert* Local Diabetes Questions Local Answers ???? * “Local Expert” not necessarily a diabetes expert
    19. 19. Identify Target Audiences, Goals & Mediums <ul><li>Goal – Help connect the members of our community who have diabetes </li></ul><ul><ul><li>Support each other </li></ul></ul><ul><ul><li>Gain a better understanding of our disease </li></ul></ul><ul><ul><li>Connect with local resources </li></ul></ul>
    20. 20. Forward to Local Diabetes Expert Record for Public Reference Local Answers Local Diabetes Questions
    21. 21.
    22. 22. Addressing a Community Need <ul><li>Gestational patient </li></ul><ul><ul><li>High glucose levels </li></ul></ul><ul><ul><li>Difficulty getting into a free clinic and sliding-scale fee clinic </li></ul></ul><ul><li>Calls were made in her behalf </li></ul><ul><li>Led to a discussion with medical directors </li></ul>
    23. 23. Improving local resources <ul><li>Patient had Primary Care Network insurance </li></ul><ul><ul><li>Had questions about diabetes pump supplies </li></ul></ul><ul><ul><li>Called state office but information was confusing for patient and PCN staff </li></ul></ul><ul><li>Notified State office </li></ul><ul><li>Arranged for more training for PCN staff members about diabetes products </li></ul>
    24. 24. Sharing Information & Experiences <ul><li>Hypoglycemia question </li></ul><ul><ul><li>Individual had a chance to describe her unique symptoms </li></ul></ul><ul><li>Sends note back saying it was helpful to understand she was not alone </li></ul>
    25. 25.
    26. 27. Entrance Keywords <ul><li>What did a person type into their search engine to find Ask Ginny? </li></ul><ul><ul><li>cost of insulin pump utah </li></ul></ul><ul><ul><li>carbohydrates lip tingle </li></ul></ul><ul><ul><li>colds and flu medication for diabetics </li></ul></ul><ul><ul><li>carbohydrate grams for pre diabetes vegetarian </li></ul></ul><ul><ul><li>my ears are buzzing help i'm a diebetic </li></ul></ul><ul><ul><li>minimed supplies utah </li></ul></ul><ul><ul><li>diabetes ideal glucose number </li></ul></ul><ul><ul><li>blue cross blue shields of utah diabetic pump coverage </li></ul></ul><ul><ul><li>where to purchase a minimed insulin pump in utah </li></ul></ul><ul><ul><li>i am a type 1 diabetic..should i exercise when i have a cold </li></ul></ul><ul><ul><li>diabetes type 2 grams of carbs for dinner </li></ul></ul><ul><ul><li>how many grams of sugar is o.k. on a daily basis for someone with type 2 diabetes </li></ul></ul><ul><ul><li>how many grams of carbohydrates are in 1 piece of pumpkin pie </li></ul></ul><ul><ul><li>is there a place where i can get a free high blood check in salt lake city, utah </li></ul></ul><ul><ul><li>diabetes help utah </li></ul></ul><ul><ul><li>program for uncontrolled diabetes </li></ul></ul><ul><ul><li>questions to ask on diabetes </li></ul></ul><ul><ul><li>i had a glucose level of 104 but my a1c was normal </li></ul></ul><ul><ul><li>blocked nose and low glucose levels </li></ul></ul><ul><ul><li>gestational diabetes vegetarian menu </li></ul></ul>
    27. 28. Intermountain Healthcare Intranet <ul><li>Improved interactions between </li></ul><ul><ul><li>Provider-Patient </li></ul></ul><ul><ul><li>Provider-Provider </li></ul></ul><ul><li>Patient-Patient? </li></ul><ul><ul><li>We know that it is powerful </li></ul></ul>
    28. 29. Think globally, but … what can you do locally? <ul><li>Create a public or private Twitter account </li></ul><ul><ul><li>Example from Frankie95 1 </li></ul></ul><ul><ul><li>Option to connect via Internet and/or text messages </li></ul></ul><ul><ul><li>Connect with other CDEs </li></ul></ul><ul><ul><li>Connect patients together </li></ul></ul><ul><ul><li>Limited to 140 characters </li></ul></ul><ul><ul><ul><li>Provide links to in-depth information </li></ul></ul></ul><ul><li>http://www.rikomatic.com/blog/2009/06/twitter-as-an-event-organization-tool-our-experience-with-the-frankie-95-birthday-festival.html </li></ul>
    29. 30. Think globally, but … what can you do locally? <ul><li>Create a local diabetes Q&A blog </li></ul><ul><ul><li>Try Blogspot , Wordpress or others </li></ul></ul><ul><ul><li>Set up to receive questions and comments via e-mail </li></ul></ul><ul><ul><li>Patients can also respond to questions </li></ul></ul><ul><ul><ul><li>Moves beyond Q&A </li></ul></ul></ul><ul><ul><li>Link to Twitter account with TwitterFeed </li></ul></ul><ul><ul><li>Use keywords (“meta-tags”) to increase people’s ability to find your blog </li></ul></ul><ul><ul><ul><li>Remember to track your web traffic with Google Analytics , Wordpress or others </li></ul></ul></ul>
    30. 31. Think globally, but … what can you do locally? <ul><li>Join or create a diabetes social network on Facebook.com or Ning.com </li></ul><ul><ul><li>Join an existing national or international network </li></ul></ul><ul><ul><ul><li>AADE on Facebook </li></ul></ul></ul><ul><ul><ul><li>TuDiabetes.com </li></ul></ul></ul><ul><ul><li>Connect local support groups </li></ul></ul><ul><ul><ul><li>Create a local identity </li></ul></ul></ul><ul><ul><ul><li>Local diabetes educators and experienced e-patients become “moderators” </li></ul></ul></ul>
    31. 32. Next steps for Ask Ginny <ul><li>Converted Ask Ginny to a Blogspot blog </li></ul><ul><li>Linked blog to Twitter </li></ul><ul><li>Linked both to a Facebook Page </li></ul>
    32. 33. Next steps for diabetes in Utah <ul><li>Create a tool for diabetes educators and professionals under the working title </li></ul><ul><ul><li>Online Family & Community Health Center </li></ul></ul><ul><li>Use empowerment education model 1 to help those affected by diabetes: </li></ul><ul><ul><li>Reflect on self-management experiments </li></ul></ul><ul><ul><li>Discuss the emotional experience of living with diabetes </li></ul></ul><ul><ul><li>Engage in systematic patient-centered goal setting and problem solving </li></ul></ul><ul><ul><li>Answer clinical questions and provide culturally tailored education materials </li></ul></ul><ul><li>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. </li></ul>
    33. 34. Next steps for diabetes in Utah <ul><li>Target audience </li></ul><ul><ul><li>Uninsured people affected by, or at risk for, diabetes </li></ul></ul><ul><ul><li>Those who care for and care about them </li></ul></ul><ul><li>Reach </li></ul><ul><ul><li>Partner with universities to conduct market research </li></ul></ul><ul><ul><li>Explore public kiosks, public libraries, ATMs and elementary schools </li></ul></ul><ul><ul><li>Utilize text messages, existing media channels and support groups </li></ul></ul>
    34. 35. Think Globally & Act Locally
    35. 36. Contact us <ul><li>Grant Sunada: </li></ul><ul><ul><li>E-mail: [email_address] </li></ul></ul><ul><ul><li>Office: 801-538-6141 </li></ul></ul><ul><ul><li>Twitter: @ UtahDiabetes </li></ul></ul><ul><li>Brenda Ralls: </li></ul><ul><ul><li>E-mail: [email_address] </li></ul></ul><ul><li>Ginny Burns: </li></ul><ul><ul><li>E-mail: [email_address] </li></ul></ul><ul><ul><li>Twitter: @ AskGinny </li></ul></ul><ul><ul><li>Blog: http://askginnyaboutdiabetes.blogspot.com </li></ul></ul><ul><ul><li>… or [email_address] </li></ul></ul>THANK YOU!

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