CWD Barcelona - DTC Perspectives

Children with Diabetes:
A Consumer Health Community
JEFF HITCHCOCK
FOUNDER, CHILDREN WITH DIABETES
APRIL 2009
Today
y My story
y One community
y Why online communities matter
y How to get involved responsibly and effectively
About Children with Diabetes, Inc.
y Children with Diabetes, Inc. (CWD) began in 1995
y Very small company
y Acquired by Johnson & Johnson in March 2008
y Revenue from online ads and conference
sponsorships
y Advertising does not influence content
Type 1 Diabetes
y Some background
{ Autoimmune disease, typically diagnosed in children,
teens & young adults
{ After learning the basics, an information management
illness
{ Balance near-term danger (hypoglycemia) with long-term
danger (complications from hyperglycemia)
{ Requires constant vigilance
{ No cure
One Parent’s Perspective
Marissa, a few days old
The Day Everything Changed
Happy second birthday … you have diabetes
So now what?
y How do I keep my child alive?
y What do we tell our family?
y What about school?
y What about our dreams?
The New Normal
y Diabetes is forever
y Enormous fear … what if
I make a mistake?
y Health care team teaches
life support …
y … but we need to know
how to live
Rethinking Your Dreams
y To put this another way …
{ I thought I was going to Italy but
…
{ “Welcome to Holland”
{ Everything changes
{ But you can still visit Italy …
Marissa in Portofino, Italy, 2006
Parent Experience – Every Day Life
y Constant anxiety over blood glucose levels
{ Balance short term vs. long term health
y How do we … ?
{ Food, school, sports, family
y Feelings of isolation lead to “Diabetes
Overwhelmus”
y Desire to return to normalcy … take me to Italy!
Growing Up
First insulin pump, age 11
School dance, age 17
Pump & swim suit at 21
With Her CWD Friends
More from a Parent’s Perspective
y Will do anything to help your child
y No longer willing to accept what doctors say as the
final word
{
Missed diagnosis
y Deep frustration over poor or irrelevant care
Excessive waiting room time
{ Failure to keep current with best practices
{ Arbitrariness of care suggestions
{
The New Health Care World
y In the United States,
{ Pharma advertises directly to consumers
{ Patients share knowledge and experiences
{ The Internet makes information access easy, and patients
– your customers – are using it
Ù
Fully 86% of internet users living with disability or chronic
illness have looked online for information about at least one
of 17 health topics*
Source: E-patients With a Disability or Chronic Disease dated October 8, 2007
Pew Internet & American Life Projecta
http://www.pewinternet.org/pdfs/EPatients_Chronic_Conditions_2007.pdf
Diabetes and the Internet
y CWD starts in June 1995
{ Experiences of a parent, story of one child
{ Featured in Yahoo! “What’s New” summer 1995
{ “Dear Dr. Hitchcock” in fall 1995
{ “Ask the Diabetes Team” November 1995
{ Chat rooms January 1996
{ 25,000 to 30,000 visitors per day in 2008
{ Acquired by Johnson & Johnson March 2008
Google “diabetes”
y As of March 2009:
{ About 94 million results, but …
{ … most are worthless or not helpful
y CWD on first page of results, along with
{ American Diabetes Association
{ US government research and health groups
{ Major research organizations
Measuring CWD’s Impact: Traffic
y Thousands of visitors per day
y ~ 250,000 pages delivered per day
y Visitors from every country with Internet access
y Significant percentage of traffic is emotional
support
y Why?
CWD Traffic Growth
CWD World Footprint
Patient Empowerment
y CWD succeeds because we empower patients
{ “I am not alone”
{ Learn from others who are “in the trenches”
{ Provide science-based knowledge that cannot be obtained
from the traditional medical establishment
y This knowledge leads to a sense of influence and
control which was lost at diagnosis
CWD: Web Content
CWD: Web Content
y Diabetes care
information
y Product
information and
reviews
y Nutrition
information
CWD: DTeam
y DTeam
{ 20+ member medical
team
{ Answers readers’
questions
{ Over 18,500 Q&As
online
{ Informational, not
medical advice
CWD: Personal Stories
y Kids, parents, adults
y Family Support
Network
y Helps eliminate sense
of isolation
CWD: Community
y Dozens of mailing lists for CWD subscribers
y Chat rooms active 24x7
y Weekly polls
y CWD Forums
From Online to Offline
y Who wants to go to Orlando to share a vacation?
CWD Conferences
Since June 2000, CWD has held 34
conferences or events which have
hosted over 20,000 people from
around the world
Friends for Life 2008
Feedback from FFL 2008
From a Diabetes Blogger:
CWD: My First Time.
Up until last week, I had never been to a CWD event before. I had heard about
them through the diabetes community, and I knew that many of the parents who
were reading my blog were members of the CWD forums. Now I know why
people are so into CWD. It's like coming home.
Kerri
A reader’s comment:
I am struggling to write my 'real' post about the event. It was so encouraging
and uplifting and I don't even know how to put it into words.
More Feedback from FFL 2008
y We've just landed back in England with heads filled with stories and
hearts filled with wonder. Our friends here will be heartily tired of us as
we tell tales of our adventures with Children with Diabetes. Friends for
Life exceeded our expectations on so many levels; we met heaps of
terrific people, made friends, learned so much about living with
diabetes and how to improve all of our lives through application and
communication. Above all we realised more than ever before that we're
not alone, that our challenges are shared by many and that where
there's life there's hope. Tom Karlya mentioned a quote from the
Escobars in his welcome speech, the one about bottling the essence of
Friends for Life so that one could open that bottle whenever one
wanted. We couldn't know at the time what he meant; we do now.
We'll be back, and we're bringing friends.
What’s it all About?
y Communication
{ Sharing ideas
{ Learning
{ Feeling of belonging
{ Support
y Companies can make a difference
{ Facilitate exchange of ideas
{ Share science and best practices
{ Be seen as part of the answer
Timing is Everything
Let Your Customers Be Your Evangelists
New Products
Self Care becomes Shared Care
CWD Poll: Visitor Profile
Feedback: Care Decisions
Feedback: Coping
Feedback: Recommend?
FFL Feedback: Care Decisions
FFL Feedback: Coping
FFL Feedback: Recommend?
References and Links
y Children with Diabetes
{
http://www.childrenwithdiabetes.com/
y AACE Presentation
{
http://www.childrenwithdiabetes.com/d_0j_21bspeech.htm
y Pew Internet & American Life
Report
{
http://www.pewinternet.org/
y Welcome to Holland
{
http://www.nas.com/downsyn/holland.html