7. Patients sharing health data
Value for patients
Value for researchers and industry
Opportunities for Mobile Computing
8. Visualizing Health:
“It made me more aware of
what I need to be doing
and the positive things I
could do. I have an eating
problem you know, and in
order to be halfway
successful I need to be
aware, to think about it
before I do it.”
-Study participant
J. Frost & B. Smith, 2002
9.
10. Core Platform
SHARE FIND LEARN
Patients sharing detailed Patients find other patients like The information shared creates
health data is what makes them. They discover what a new knowledge about the
our communities unique. options are available for real-world treatments,
This information is the basis treatment and if their experience symptoms, and reality of living
of the PatientsLikeMe with their disease is normal. They with illness. Patients learn about
network and validates each can reach out to others like them their disease and themselves in
individual. for advice and insight. context of the community.
12. Currently over 50,000 Patients, 9 conditions
First # Patient
PatientsLikeMe Community
Patient Members
12% US
ALS Nov 2005 4,200
Prevalence
MS Mar 2007 13,720
10% US
Parkinson’s Mar 2007 3,969 Newly
diagnosed
HIV/AIDS Sep 2007 2,562
Mood Feb 2008 12,933
PSP Sep 2008 <500
MSA Sep 2008 <500
Devic’s Sep 2008 <500
Fibromyalgia Nov 2008 9,668
13. How are you feeling?
Very good
Good
Ok
Bad
Very bad
18. Value to this individual
“I added the symptom Menstrual Cycle and
PMS…Then, I could actually print out my
charts and show the doctor: My back pain
is more severe, that’s about the only time I
have depression or anxiety, even my
allergies were worse …”
19. Researching a Treatment
“I wanted a milder analgesic that did not have the strong side effects as the
more powerful narcotics …”
See who is taking it
Read about the effect
Discuss findings with the community
Why they take it
20. Value of PatientsLikeMe:
Some Results from a User Survey
1,323 Users completed the survey
• 71% helpful in learning about the symptoms
• 67% getting better care by recording symptoms
• 69% feel more comfortable discussing sensitive
topics on PatientsLikeMe such as sex, sexuality,
religion, or spirituality than in online and offline
support groups
23. Data missing from published trials reported on
PatientsLikeMe
Drug Name Sexual side effect % reported on % reported in
(Patient labels) PatientsLikeMe clinical trial *
Prozac Sexual side effects 24% 4%
Sexual dysfunction 17%
(N=169) (N=2869)
Lexapro Decreased sex drive 22% 3%
(N=106) (N=715)
Zoloft Loss of sex drive 27% 6%
(N=99) (N=2799)
Cymbalta Decreased sex drive 19% 3%
(N=122) (N=1139)
* as ‘libido decreased’
24. Better understanding of rare diseases
• Primary Lateral Sclerosis (PLS) and Progressive Muscular Atrophy
(PMA) are two rare variants of the disease ALS
• To date, we now have 182 patients with PLS and 270 with PMA.
• Previous studies examined about 40 PLS patients
• Can begin to understand PLS progression for the first time
25. Unique data on the impact of experimental
and off-label treatments
26.
27. “To listen well is as powerful a
means of communication and
influence as to talk well.”
John Marshall
