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 patients 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
  patients 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 patients 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 ones 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 childrens 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
  healthI 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.alliancehealt
  h.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 didnt
  want to hear it and (B) they dont know what its
  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.diabetesdai
  ly.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.childrenwithdi
  abetes.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
• MyDiabetes http//mydiabetessocialnetwork.ning.co
  m/
• 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?story
  article6598
• 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?storyarticle6543
• Internet Program Improves Diabetes Self-Care-
  Clinic Visits Not Sufficent, Diabetes In Control,
  Issue 459, 3/10/2009. http//www.diabetesincontrol
  .com/results.php?storyarticle6533
• DEPLOY Intervention program decreased 10-year
  CHD risk for adults with prediabetes, Endocrine
  Today, posted 3/09/2009. http//www.endocrinetoday
  .com/view.aspx?rid37631
• Center for Connected Health http//www.connected-h
  ealth.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?client
  codeURZUWAOHTIissueid2094newsid3review

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-he
  althcare-2009?id5839673ABlogPost3A552770page2
  comments
• Health 2.0-related blogs
• Pharma 2.0 http//pharma2blog.com/
• DiabetesMine http//www.diabetesmine.com
• Health Management Rx http//hmrx.posterous.com/
• The Health Engagement Blog http//www.engageinheal
  th.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/1
  6/social-networking-sites-changing-way-people-lear
  n-/
• "Health 2.0 How far can interactive digital
  medicine go?", The Economist, 4/16/2009,
  http//www.economist.com/specialreports/displaysto
  ry.cfm?story_id13437940