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Using social networking to improve self-care
and standards of care
Presented by Brenda Faith Bell
at the
Trenton Computer Festival, April, 2009
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The author is a member of the following diabetes online
communities:
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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.
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Once diagnosed, one has it for life
Most management is the patient’s direct
responsibility
◦ Diet and exercise
◦ Medications
◦ Monitoring
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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
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Financial cost
◦ Co-pays, insurance costs, out-of-pocket
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Limited choice of professionals
◦ In-network, unusual specialty, etc.
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Limited access to appropriate professionals
◦ Lack of proximity; logistical issues
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Limited individualization
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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
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Unwillingness of current social and family
circles to accommodate the patient
◦ e.g., family unwilling to change its diet
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A patient’s existing social circle may not
include other people with similar medical
issues
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Support with/from people with similar
medical issues
◦ Classic support groups evolved into the digital
space
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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
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Personal identity can be hidden behind an
online identity
◦ Fear of job, insurance, and care discrimination
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“Welcome” areas explain the medical
condition of interest
◦ Standard and advanced diagnosis methods
◦ Different variations on the condition
◦ Common complications and comorbidities
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News feeds advise of current research
Forums discuss management methods
Some communities have “ask an expert”
features
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Social Connectedness
◦ Others have the same condition, or understand the same
condition
◦ Empathy – other members have had similar experiences
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Tailored Information
◦ Basic and in-depth medical information about the
condition
◦ Management techniques – current and emerging options
◦ Working with medical professionals and insurance
companies
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Relative Anonymity
Any Time, Any Place
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Better informed patients
◦ Improved understanding of the medical issues
◦ Increased technical understanding of disease management
◦ Ongoing dialog improves patient-based best-methods
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Improved patient compliance (self-care)
◦ Understanding of the ramifications of management
decisions
◦ Social encouragement for active management
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Improved patient outcomes (long-term health)
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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
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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
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Forums
◦ Often arranged by medical interests (Type 1, Type 2,
Newly-Diagnosed, etc.)
◦ May include “ask an expert”; may be moderated by
experts
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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
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News and reviews
◦ Devices and medications
 Pumps, meters, types of insulin and oral medications
◦ Research
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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
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Live chat
◦ General chat
◦ Directed chat with or without experts
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Activities and contests
◦ Increase activity and visibility
◦ Fund-raising for community support or
community-supported charities
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Events calendar
◦ Local and regional activities; diabetes expos; fundraisers; meet-ups and get-togethers
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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.
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Free Network platform
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Commercial
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Connection facilitating
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◦ ad-supported
◦ e.g., Ning
◦ sponsored by manufacturer or pharmacy
◦ e.g., Children With Diabetes (sponsored by Johnson & Johnson); American
Diabetes Wholesale (pharmacy sponsors its own community)
◦ 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
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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:
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dLife
My Diabetes Central
TuDiabetes and EsTuDiabetes
Diabetic Rockstar
Diabetic Connect
Children With Diabetes
Diabetes Daily
There are easily three or four times more diabetesoriented social networks than these, based in the
United States alone
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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
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Website features include:
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“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
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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:
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dLife (charitable) Foundation
Diabuddy program for children
Co-branding in stores
Outreach materials in hospitals, doctors’ offices, and
diabetes clinics
Mailed newsletters
Media Kit
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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. :)
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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...”
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Standard Features:
◦ Forums
 News, condition-type, treatment type, humor
◦ Groups
 Geographical, conditions-based, personal interests,
activism
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Personal blogs
User-posted photos and videos
Events calendar
News Feeds
RSS Blog Feeds
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Activism
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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
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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…
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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.
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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...
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“This is the Diabetic Revolution. This is DiabeticRockstar.com”
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Standard features include:
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Special attractions include
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Activism: Fund-raisers for awareness, Fight-It
campaign
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Blogs
Forums
Groups (BOFs)
User-posted photos and videos
Events calendar
Moderated chat rooms
Pop-up chat
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Mentoring program
Offline fundraisers
Fight-It charitable organization
Special children’s section (under development)
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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.
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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.
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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.
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Over 25,000 members
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Standard Features Include:
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Forums
Private messaging
News (both site- and user-contributed)
Blog feeds
User-posted photos and videos
Events calendar
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User-generated book reviews
User-generated product reviews
Activity-based ranking
Recipe reviews
Unique features include:
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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.
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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
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Standard Features Include:
◦ Personal blogs
◦ Forums
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Activism:
◦ CGM (Continuous Glucose Monitor) Approval
petition
 Aimed at awareness and improving rates of healthinsurance approval for continuous glucose monitors
 CGMs are important tools in the management of
hypoglycemia unawareness
◦ World Diabetes Day Google Doodle petition
◦ Other electronic petitions
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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
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For more information, go to
http://www.diabetesdaily.com/about/
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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:
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Unique features include:
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◦ Family Support Network: http://www.childrenwithdiabetes.com/fsn/
◦ Chat rooms, mailing lists, forums
◦ Community Conferences (annual Friends for Life Conference and Expo)
◦ Technical Conferences
◦ Assorted other resources
 Blood glucose meter comparison chart
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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
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Diabetes Friends
◦ Web site: http://www.diabetesfriends.net/
◦ Standard features include:
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Groups
Personal blogs
Events calendar
Chat room
User-contributed photos and videos
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Ning Platform social networks:
◦ DiabetesGroup.org http://diabetesgroup.org/
 Supported by Kify Foundation http://www.kify.org
◦ MyDiabetes http://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
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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
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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
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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
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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=20
94&newsid=3&review=
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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-yalehealthcare2009?id=583967%3ABlogPost%3A552770&page=2#com
ments
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Health 2.0-related blogs
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Pharma 2.0 http://pharma2blog.com/
DiabetesMine http://www.diabetesmine.com
Health Management Rx http://hmrx.posterous.com/
The Health Engagement Blog
http://www.engageinhealth.com/
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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/socia
l-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/displays
tory.cfm?story_id=13437940