The document summarizes PatientsLikeMe, a website that allows patients to track their health indicators, share their experiences, and connect with others who have similar conditions. It discusses how social media and mobile technologies have organized health information sharing and given individual stories collective wisdom. Patients are able to engage on the site by creating health profiles, finding support from others, learning from community reports, and bringing their improved understanding to doctor appointments to facilitate treatment conversations. The site aims to transform individual experiences into aggregated data and put experiences into clinical context to advance medical knowledge.

1. 7th Annual Weitzman Symposium – June 7, 2012
PatientsLikeMe: Patient Centered Virtual Medical Home

2. Healthcare
Reform
Personalized
Medicine
Clinician
Accountability
Activated
Patients
“A great wind is
blowing and that gives
you either imagination
or a headache”
Catherine the Great

3. 3
…major driver is technology!

4. 4
The Social Life of Health Information, 2011
“I don’t know, but I can try to find out”
§ 80% of Internet users have looked online for information about a
specific condition or treatment.
§ 34% have read someone else’s commentary or experience about
health or medical issues online
§ 25% have watched an online video about health or medical issues
§ Health professionals and offline resources are central to health
care, but people use online social tools to:
– gather information
– share stories
– discuss concerns

5. 5
Social Life of Healthcare Online is Changing
“I know, and I want to share my knowledge”
§ 27% of Internet users have tracked their weight, diet, exercise,
symptoms or some other health indicator
§ 14% of social network users have raised money for or drawn
attention to health-related issue or cause
§ 11% of social network users have posted comments, queries, or
information about health or medical matters
§ The social life of health information is robust and is being driven
forward by:
– Availability of online social tools
– Access to health related mobile technology
– Motivation to connect with others

6. 6
Organizing the Power of Social Media & Mobile Technology
Individual Stories Collective Wisdom

7. “Given my status,
what is the best
outcome I can hope
to achieve, and how
do I get there?”

8. 8
Engaging Patients Responsibly
Honor Patients’ Trust
Our patients trust us with their
most valued health information.
We honor that trust, and we are
dedicated to advancing the
knowledge in the disease with
the information they share.
Openness
Per our Openness Philosophy,
we believe that sharing health
information is good. Why?
Because sharing will drive
massive change in healthcare.
Transparency
No surprises. Our members
shouldn't be surprised by
anything we do. Our goal is to
disclose what we do with
members' information, how we
make money, as well as all of
our partnerships on the site.
Create WOW!
When people see our site, we
want them to think, “Wow!”
Achieving our vision takes
flawless execution and a deep
understanding of patient needs.
PATIENTS FIRST

10. 10
Patient Engagement: Share, Find, Learn
Step
1:
Create/update
and
share
your
health
profile
Step
2:
Find
support
from
others
like
you
and
compare
experiences
Step
3:
Learn
from
aggregated
community
Treatment
and
Symptom
Reports
Step
4:
Take
profile
to
your
doctor
to
have
an
improved
treatment
conversa?on
Step
5:
Play
an
integral
part
in
your
own
health
care

11. 11
Share: Technology Amplifies One Patient’s Voice
• Member Voice
n = 1
• Welcomes and
comments sent
n = 16,000
• Patients she
reached out to
n = 15,000
• Network power
n = limitless

13. 13
Find: Power of Social Network Connections
Every line
represents a single
patient viewing a
single profile on a
single day
Red line = viewer
Blue line = viewee

14. 14
Learn: Transforming Experiences into Data

15. 15
Understand: Putting Experiences into Context

16. 16
User Voices: Creating a Patient Vocabulary

17. 17
Clinical Trial Data Updated Nightly

18. Partnering with Patients in Research

19. 19
Survey says.... “we don’t tell you everything”

20. 22% - I need less
inpatient care as a
result of using
PatientsLikeMe
26% - I think about
harming myself less
as a result of
PatientsLikeMe
41% - I have
reduced behaviors I
knew were risky
because of
PatientsLikeMe
63% - I know about
the risks & benefits
of a drug holiday
because of
PatientsLikeMe

21. 21
*
Wicks P, Massagli M, Frost J, Brownstein C, Okun S, Vaughan T, Bradley R, Heywood J, (2010) Sharing Health Data for Better Outcomes on PatientsLikeMe,
Journal of Medical Internet Research, 12(2):e19
Patient Report Improved Adherence

22. 22
Patient Reported Benefits: Epilepsy users report
One-third of respondents had no one in the real world with
whom to discuss their epilepsy.
After joining, two-thirds reported a connection to at least one other

23. 23
§ Patient-reported online
data collection is an
alternative method for
studies of efficacy for
off-label drugs which
are unlikely to be
funded commercially
§ ALS patients are using
amitriptyline to dry
excess saliva; using a
side effect as a
primary purpose
§ Rated more effective
for its side effects than
its indication!
§ Winner of the
inaugural Medicine
2.0 prize
21% of all
prescriptions are for
off-label purposes;
73% of these lack
scientific evidence
for their use
Contributing New Information: Off-label Uses

24. 24
Patient Requested Trial on PatientsLikeMe

25. 25
Timeline: ALS Patient Activity Related to Lithium