1. Consumers United for Evidence-based Healthcare
2013 Annual Membership Meeting
July 26, 2013
Sally Okun, VP Advocacy, Policy & Patient Safety
Panel: Where do we get our information?
Using social networking sites to find out what is important to patients

3. Who we are
Patients can:
 Learn about living with
and treating disease
 Connect with others who
have the same condition
 Connect with others with
shared interests
 Track personal health
history and progress
 Participate in their care
and be better prepared
a patient-powered research network that measures
what matters to real people
August 2, 2013 PROPRIETARY &
CONFIDENTIAL
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4. Individual Experiences => Collective Knowledge
August 2, 2013 PROPRIETARY &
CONFIDENTIAL
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 PatientsLikeMe started with
12 communities
 Now nearly 2000 conditions
represented
 Over 200,000 members
 Each year, we see:
● 3.3 million private messages
● 1.2 million profiles views
● 400,000 forum posts
● 5-10% of newly diagnosed
MS, ALS patients join

5. A Range of Tools for Patient
Reported & Generated Data
Health-related QoL
Symptoms
 Severity
 Functional Impact
Treatment impact
 Effectiveness
 Adherence
 Side Effects
Self-monitor tools
 BP
 Weight
 InstantMe
Condition specific
 Primary outcomes
 Labs & Tests
History
 Medical history
 Life events

6. Lessons from the
PatientsLikeMe Community

7. August 2, 2013 PROPRIETARY &
CONFIDENTIAL
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After using PatientsLikeMe…
 71% HIV patients agreed or strongly
agreed that they took more of an
interest in their lab values
 63% of members agreed they had a
better understanding of the
consequences of taking a “drug
holiday”
 12% of members changed their
physician
 Only 10% of time are ALS patients
told about cognitive symptoms yet
66% want to know
Sharing Health Data => Shared Insights

9. Wicks & Fountain (2012) Patient assessment of physician performance of epilepsy quality of care measures.
Neurology Clinical Practice 2:335
53%
54%
Patient Illuminate Gaps in Evidence-based Care

10. 10
Leonard Kish recently
called patient engagement
“the blockbuster drug of
the century.”
He opined, “If patient
engagement were a drug, it
would be the blockbuster
drug of the century and
malpractice not to use it.”

12. Open Registry => Transparent Openness
 A well-defined population
studied under controlled
conditions
 Patients are subjects, not
partners in the research
since research is designed to
test against a specific
question or clinical insight
 A well-defined, growing
population fitting inclusion
and exclusion criteria
 Patients only interact with
researchers during the
study
 Comprehensive patient
population where researchers can
integrate new questions and
measures anytime
 Patients are proactively involved
in research and can interact
regularly with researchers
 Offers 360 degree view of
patients, 365 days a year
Traditional
Clinical Research
Traditional
Patient Registry
PatientLikeMe’s
Open Registry
August 2, 2013 PROPRIETARY &
CONFIDENTIAL
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13. www.openresearchexhange.com

14. To learn
listen well
to impressions
voiced by
patients first.
Sally Okun
sokun@patientslikeme.com