Paul Wicks, R&D Director at PatientsLikeMe, gave an overview of the work he has been involved in at PatientsLikeMe.

1. Paul Wicks, PhD – R&D Director
Spotlight on PatientsLikeMe

2. The PatientsLikeMe process is to help people share their health information in order to learn from
others like them and then use that information to discuss treatment options with their health care
team
Step 1: Step 2:
Create/update and Find support from
share your health others like you and
profile compare experiences
Step 5: Step 3:
Play an integral Learn from aggregated
part in your own community Treatment
health care and Symptom Reports
Step 4:
Take profile to your doctor to have an
improved treatment conversation

5. Our core values
Honor Patients’ Trust Openness
Our patients trust us with their most Per our Openness Philosophy, we
valued health information. We honor believe that sharing health information
that trust and are dedicated to is good. Why? Because sharing will
advancing the knowledge in each drive massive change in healthcare.
disease with the information they
share.
PATIENTS FIRST
No surprises. Our members shouldn't When people see our site, we want
be surprised by anything we do. Our them to think, “Wow!” Achieving our
goal is to disclose what we do with vision takes flawless execution and a
members' information, how we make deep understanding of patient needs.
money, as well as all of our
partnerships on the site.
Transparency Create WOW!

6. 63% - I know about 41% - I have
the risks & benefits reduced behaviors I
of a drug holiday knew were risky
because of because of
PatientsLikeMe PatientsLikeMe
22% - I need less 26% - I think about
inpatient care as a harming myself less
result of using as a result of
PatientsLikeMe PatientsLikeMe

7.  MS patients using needle-
based treatments struggle
to be adherent despite side
effects and other barriers
 Literature review, forum
discussion review, and
surveys combined to
develop a new instrument
(MS Treatment Adherence
Questionnaire)
 MSTAQ predictive of
missed doses and
suggests coping
mechanisms for clinical
use
 Funded by Novartis
 Instrument released open
access for any use

8. Case Study: How helpful would these interventions be for improving immunosuppressant adherence?

9. One-third of respondents had no onewho“the realwith others onwhom
2010 Epilepsy User Survey: Those in connect world” with
to discuss their epilepsy.wider range of perceived benefits to their
PatientsLikeMe report a After joining PatientsLikeMe, two-thirds
epilepsy management and quality of life
reported a connection to at least one other person with epilepsy.
59% -the site has 50% - 30% -
given me a better PatientsLikeMe PatientsLikeMe
understanding of helped me helped me be more
my seizures understand side adherent
effects
23% - I have had
fewer visits to the
ER
28% -
PatientsLikeMe gave
me more and
better control
over my condition
49% - recording
my seizures helps
me manage my
condition

10. 2010 Epilepsy User Survey: with otherswho connectreport a wider rangeon
2011 Epilepsy User Survey: Those who connect Those on PatientsLikeMe with others of
PatientsLikeMetheir epilepsy management and qualityperceived benefits to their
perceived benefits to report a wider range of of life
epilepsy management and quality of life

20. Paul Wicks, PhD – R&D Director
Spotlight on PatientsLikeMe