The Role of Online Communities in Diabetes Management

1. The Role of Online Communities in Diabetes Management Using social networking to improve self-care and standards of care Presented by Brenda Faith Bell at the Trenton Computer Festival, April, 2009

2. Disclosures • The author is a member of the following diabetes online communities: • TuDiabetes • dLife • Diabetes TalkFest • Diabetic Connect • Diabetic Rockstar • Diabetes Friends • She is speaking only as a patient-member and observer • She is not a licensed medical professional. • While some communities may retain licensed professionals as subject-matter experts, no member or expert may provide direct medical advice to any community member. All members are encouraged to consult their personal medical teams before making any changes to their treatment plans.

3. Diabetes is a chronic condition • Once diagnosed, one has it for life • Most management is the patient’s direct responsibility • Diet and exercise • Medications • Monitoring • Proper management is not “one size fits all” • Different origins and types of diabetes • Different reactions to the same medications and diet plans means diligence and flexibility are required

4. Limitations of Traditional Healthcare Delivery • Financial cost • Co-pays, insurance costs, out-of-pocket • Limited choice of professionals • In-network, unusual specialty, etc. • Limited access to appropriate professionals • Lack of proximity; logistical issues • Limited individualization

5. Chronic Disease Begets Social Isolation • Social and family circles may not understand the patient’s medical needs • Family and friends with diabetes may have different medical nutrition plans, medications, and medication schedules • Unwillingness of current social and family circles to accommodate the patient • e.g., family unwilling to change its diet • A patient’s existing social circle may not include other people with similar medical issues

6. Patient-Based Online Communities Reduce Social Isolation • Support with/from people with similar medical issues • Classic support groups evolved into the digital space • No limitations of time, distance, or mobility • There may be no nearby support groups • Logistical and health complications may limit travel • Persistent availability of information via online forums • Personal identity can be hidden behind an online identity • Fear of job, insurance, and care discrimination

7. Patient-Based Online Communities Educate the Patient • “Welcome” areas explain the medical condition of interest • Standard and advanced diagnosis methods • Different variations on the condition • Common complications and comorbidities • News feeds advise of current research • Forums discuss management methods • Some communities have “ask an expert” features

8. Attractions of Patient-Based Online Communities • Social Connectedness • Others have the same condition, or understand the same condition • Empathy – other members have had similar experiences • Tailored Information • Basic and in-depth medical information about the condition • Management techniques – current and emerging options • Working with medical professionals and insurance companies • Relative Anonymity • Any Time, Any Place

9. Results of Patient-Based Online Communities • Better informed patients • Improved understanding of the medical issues • Increased technical understanding of disease management • Ongoing dialog improves patient-based best-methods • Improved patient compliance (self-care) • Understanding of the ramifications of management decisions • Social encouragement for active management • Improved patient outcomes (long-term health) • More likely to seek out appropriate professional care • More likely to receive appropriate care • Patients feel more “in control” of their medical conditions • Social support helps patients get through “burnout” periods

10. General Features of Diabetes Online Communities • Standard community features are tailored to the needs of people with diabetes • Groups • May be oriented to medical or non-medical interests • Management methods • Brands and models of equipment • Geographical location • Forums • Often arranged by medical interests (Type 1, Type 2, Newly-Diagnosed, etc.) • May include “ask an expert”; may be moderated by experts

11. General Features of Diabetes Online Communities • Blogs • Personal blog space • May or may not be related to living with diabetes • Featured bloggers • Known diabetes bloggers • Specific diabetes voices and themes • Expert bloggers • Healthcare professionals • Patient experts

12. General Features of Diabetes Online Communities • News and reviews • Devices and medications • Pumps, meters, types of insulin and oral medications • Research • Medications and care regimens • Origins of diabetes • Diabetes prevention • Medical nutrition therapy (diet) • Recipes and Nutrition • Including nutritional value and carbohydrate information • Books and publications

13. General Features of Diabetes Online Communities • Live chat • General chat • Directed chat with or without experts • Activities and contests • Increase activity and visibility • Fund-raising for community support or community-supported charities • Events calendar • Local and regional activities; diabetes expos; fund-raisers; meet-ups and get-togethers

14. General Features of Diabetes Online Communities • External links • Diabetes organizations • American Diabetes Association, Juvenile Diabetes Research Foundation, Diabetes Research International, Joslin Institute, etc. • Independent Diabetes News Blogs • DiabetesMine, Diabetes Update, etc. • Online pharmacies and fulfillment houses • American Diabetes Wholesale, Mini-Medical, Liberty Mutual, etc. • Manufacturers’ sites • Lifescan, Abbott Diabetes Care, Accu-Chek, Deltec, etc. • Patient Assistance Programs • Diet- and Diabetes- Management Sites • SugarStats, SweetSpot, Calorie King, Nutrition Data, etc.

15. Funding Models • Free Network platform • ad-supported • e.g., Ning • Commercial • sponsored by manufacturer or pharmacy • e.g., Children With Diabetes (sponsored by Johnson & Johnson); American Diabetes Wholesale (pharmacy sponsors its own community) • Connection facilitating • Connects vendors/advertisers with potential audience • e.g., DiabeticConnect (sponsored by Alliance Health) • Foundation-supported • Hybrid • e.g., Juvenation (supported by the Juvenile Diabetes Research Foundation) • Using one or more of the above models, multiple sponsors, affiliate links, etc. • e.g., Diabetic Rockstar

16. Diabetes Online Communities • A number of diabetes communities, social networks, blogs, portals, and support sites can be found at the Diabetes OC • Some of the major communities and networks include: • dLife • My Diabetes Central • TuDiabetes and EsTuDiabetes • Diabetic Rockstar • Diabetic Connect • Children With Diabetes • Diabetes Daily • There are easily three or four times more diabetes-oriented social networks than these, based in the United States alone

17. dLife • Website: http://www.dlife.com • Founded by people with diabetes, for support of people with diabetes • Commercial entity (LifeMed Media), funded by advertising, co-branding, and commercial partnerships • Unique feature: weekly TV show (Sundays 7PM on CNBC) • Both online and offline programs

18. dLife • Website features include: • “Ask an Expert” feature • 19 active forums, some moderated by professionals • Videos on demand • News feed • Online store • “Blogabetes” – featured bloggers • Expert columns • Recipe database

19. dLife • New, more formal “social community” • Web site: http://diabetescommunity.dlife.com • Includes personal blogs • Includes “Groups” (BOFs) based on general condition • Forums and programs aimed at diabetes professionals • Offline programs include: • dLife (charitable) Foundation • Diabuddy program for children • Co-branding in stores • Outreach materials in hospitals, doctors’ offices, and diabetes clinics • Mailed newsletters • Media Kit

20. dLife • Community Testimonials • None of us really want to face this disease alone… …with finding this community, I am no longer scared and alone… • …living in a small community where it feels like I haven't met a single person that is diabetic… I feel like I have no one to talk to, or get advice from. I have only been on here for about a week but have learned alot already. I think it's a great place for people to feel like they aren't alone, and they always have somebody to go to when they need to vent, ask a question, or just talk to somebody who may know what they feel like. :)

21. TuDiabetes and EsTuDiabetes • Website: http://www.tudiabetes.com (English) http://www.estudiabetes.com (Español) • Ning platform • Supported by Diabetes Hands Foundation • About: • Over 11,000 members between the two communities • Open to patients with all types of diabetes, their family/friends and caregivers as well as health care professionals... • “We believe everyone is directly or indirectly TOUCHED by diabetes...”

22. TuDiabetes and EsTuDiabetes • Standard Features: • Forums • News, condition-type, treatment type, humor • Groups • Geographical, conditions-based, personal interests, activism • Personal blogs • User-posted photos and videos • Events calendar • News Feeds • RSS Blog Feeds

23. TuDiabetes and EsTuDiabetes • Activism • Publicity-drawing contests • Diabetes Hands Foundation • World Diabetes Day Google Doodle petition • Founder Manny Hernandez has given expert talks on Health 2.0 and social communities as they affect diabetes care

24. TuDiabetes and EsTuDiabetes • Testimonials: • …Until TuDiabetes, I felt that I had few people on my team against this disease. Now… I don't have to go through this alone. • …I find real information here, and I find others have been down the roads I am going down now… Real people who really care… • …It has allowed me to understand and ask questions without feeling stupid so that I can in turn ask intelligent questions to [the endocrinologist]…. • So far, it's the only place I've found where wonderful people have answered my questions, and made me feel less alone. I've learned more in the short time I've been a member than any of the doctors explained at diagnosis… • …I had essentially stopped taking care of myself… …This Community has helped with my disease as much as any Dr... TuDiabetes… has connected me with literally thousands of people who know what it's like to be me…

25. Diabetic Rockstar • Web site: http://www.diabeticrockstar.com • Ning platform • Diabetic Rockstar operates multiple programs aimed at helping newly diagnosed, uninsured and/or in-need diabetics, including: • The Diabetic Rockstar social network, where people of all backgrounds, countries and cultures can come together to “Fight” diabetes. • A Mentor Program, pairing people in need of more support with peer mentors • The Fight It campaign, aimed at getting testing supplies and medications to diabetics who could not otherwise afford them. • Focused on “Rockstar Attitude” and Creed • A Rockstar • Lives life by one’s own rules, fighting back against stereotypes, misconceptions and harrassment. • Is not complacent and does not live by the status-quo. • Does not say "I'll do it tomorrow". • Lives life to the fullest, realizing we are not here for a long time... • “This is the Diabetic Revolution. This is DiabeticRockstar.com”

26. Diabetic Rockstar • Standard features include: • Blogs • Forums • Groups (BOFs) • User-posted photos and videos • Events calendar • Moderated chat rooms • Pop-up chat • Special attractions include • Mentoring program • Offline fundraisers • Fight-It charitable organization • Special children’s section (under development) • Activism: Fund-raisers for awareness, Fight-It campaign

27. Diabetic Rockstar • Testimonials • I have not taken very good care of myself… Recently, I have taken a more active role in my health…I owe this "boost" to this website. The little something I have been missing is realizing I am not alone. I personally don't know anyone else with diabetes... But watching this site grow over the last couple months, I realize there are lots of "us" out there… • Diabetic Rockstar is different… Everyone is supportive of one another, without the "oh you poor thing" nonsense that you might expect in other places... What I've needed is to know that there are other people who know what it's like to deal with all of this diabetic stuff that I've had to get accustomed to … …[the Rockstar Creed] has been a huge source of inspiration to me… you can either fight and live with it, or die from it. I've made my choice. I'm going to fight it all the way. And Diabetic Rockstar is helping me do that. •  I would just say that I was on a few other sites/groups before running across DR and have found that they are not nearly as supportive or friendly as the people here. I have found that here folks will give their opinions (like it or not), but without being condescending or judgmental. Also this is a very broad spectrum community that provides a wide variety of experiences to draw from where as many other sites don't have as much variety in their members. I believe it has alot to do with the attitudes of the other sites that make it difficult for less experienced people to feel as comfortable to ask questions as people do here.

28. Diabetic Connect • Web site: http://www.diabeticconnect.com • Hosted by Alliance Health http://www.alliancehealth.com • Alliance Health is a commercial entity that looks to pair healthcare solution providers (pharmaceutical companies, medical supply companies, etc.) with targeted patient audiences in a mutually-beneficial relationship. • Over 25,000 members

29. Diabetic Connect • Standard Features Include: • Forums • Private messaging • News (both site- and user-contributed) • Blog feeds • User-posted photos and videos • Events calendar • Unique features include: • User-generated book reviews • User-generated product reviews • Activity-based ranking • Recipe reviews

30. Diabetic Connect • Testimonials • Being part of this site has saved my life, of that I am sure. • I felt like I never could talk to anyone about what I am going through because (A) they didn’t want to hear it and (B) they don’t know what it’s like to deal with diabetes and everything that comes with it. So I am incredibly glad to have a place to come and be understood, where I have a group of wonderful friends to talk with as well.

31. Diabetes Talkfest • Web site: http://www.diabetestalkfest.com • Ning platform • Focused primarily on chat room • Scheduled talks with professionals in the fields of diabetes care and research • Chat transcripts are available for download the next day • Separate, moderated under-18 chat room • Standard Features Include: • Personal blogs • Forums

32. Diabetes Talkfest • Activism: • CGM (Continuous Glucose Monitor) Approval petition • Aimed at awareness and improving rates of health-insurance approval for continuous glucose monitors • CGMs are important tools in the management of hypoglycemia unawareness • World Diabetes Day Google Doodle petition • Other electronic petitions

33. Diabetes Daily • Web site: http://www.diabetesdaily.com • Founded in 2005 • Home of Wikibetes: http://wiki.diabetesdaily.com/wiki/Diabetes_Guides_and_Tools • Features include: • Featured blogs • Personal blogs • Forums • For more information, go to http://www.diabetesdaily.com/about/

34. Children With Diabetes • Web site: http://www.childrenwithdiabetes.com • Sponsored by Johnson & Johnson http://www.jnj.com, but kept vendor-neutral • One of the oldest, best-known, and most comprehensive diabetes online support sites • Aimed primarily at parents of children with diabetes, and their children • Community includes: • Family Support Network: http://www.childrenwithdiabetes.com/fsn/ • Chat rooms, mailing lists, forums • Unique features include: • Community Conferences (annual Friends for Life Conference and Expo) • Technical Conferences • Assorted other resources • Blood glucose meter comparison chart

35. Other Online Diabetes Communities • Juvenation • Web site: http://juvenation.org/ • Sponsored by the Juvenile Diabetes Research Foundation (JDRF) http://www.jdrf.org • Aimed at people with Type 1 (autoimmune) diabetes • Features include: • Groups • Forums • Personal blogs • Diabetes Friends • Web site: http://www.diabetesfriends.net/ • Standard features include: • Groups • Personal blogs • Events calendar • Chat room • User-contributed photos and videos

36. Other Online Diabetes Communities • Ning Platform social networks: • DiabetesGroup.org http://diabetesgroup.org/ • Supported by Kify Foundation http://www.kify.org • MyDiabeteshttp://mydiabetessocialnetwork.ning.com/ • Heart & Soul Healthy Sister Movement http://heartandsoulhealthynetwork.ning.com/ • Aimed at the African-American community • Focusing on healthy living in general – not limited to diabetes • Other diabetes-related social networks • WeAreDiabetic.org http://www.wearediabetic.org/ • Part of the WeAreUs (http://www.weare.us/) group of social communities for people with chronic health conditions • Diabetes Sisters http://www.diabetessisters.org • Aimed at all women with diabetes

37. Conclusions • Chronic diseases such as diabetes incur both a sense of social isolation and a tendency towards burnout • Traditional healthcare paradigms limit access to care • Online communities and social networks are filling the void • Reducing social isolation • Improving patient understanding and compliance • Improving patient-doctor-insurer communications • Improving patient outcomes • Online communities and social networks do not replace traditional healthcare delivery; they enhance it

38. Resources • Internet-based resources and review articles discussing intervention methods. While most discuss professional-based intervention, certain aspects apply to peer-based communities as well. • Barriers to Effective Diabetes Care Revealed, Diabetes In Control, Issue 462, 3/31/2009. http://www.diabetesincontrol.com/results.php?storyarticle=6598 • Lifestyle Program for Diabetics Improves Mind, Body and Wallet by 87%, Diabetes In Control, Issue 459, 3/10/2009. http://www.diabetesincontrol.com/results.php?storyarticle=6543 • Internet Program Improves Diabetes Self-Care- Clinic Visits Not Sufficent, Diabetes In Control, Issue 459, 3/10/2009. http://www.diabetesincontrol.com/results.php?storyarticle=6533 • DEPLOY: Intervention program decreased 10-year CHD risk for adults with prediabetes, Endocrine Today, posted 3/09/2009. http://www.endocrinetoday.com/view.aspx?rid=37631 • Center for Connected Health http://www.connected-health.org/ a program of Partners Health http://www.partners.org, an integrated healthcare system (integrating general, specialized, and online care) • Hernandez, Manny. "The Healing Effect of Social Networks", The Voice, Greater Bay Area, Juvenile Diabetes Research Foundation, Fall 2008. http://www.newsletternet.com/newsletter.asp?clientcode=URZUWAOHTI&issueid=2094&newsid=3&review=

39. Resources • Presentations from Online Community Leaders • Hernandez, Manny. “Healthcare Innovation Online” panel, Healthcare 2009 Conference, Yale University, 4/3/2009. Text available online. http://tudiabetes.com/profiles/blogs/spoke-yale-healthcare-2009?id=583967%3ABlogPost%3A552770&page=2#comments • Health 2.0-related blogs • Pharma 2.0 http://pharma2blog.com/ • DiabetesMinehttp://www.diabetesmine.com • Health Management Rx http://hmrx.posterous.com/ • The Health Engagement Blog http://www.engageinhealth.com/

40. Resources • News Stories About Social Networking and Health • "Social networking sites changing the way people learn about health", The Lawrence Journal-World, 4/16/2009. http://www2.ljworld.com/news/2009/apr/16/social-networking-sites-changing-way-people-learn-/ • "Health 2.0: How far can interactive digital medicine go?", The Economist, 4/16/2009, http://www.economist.com/specialreports/displaystory.cfm?story_id=13437940