panel: where do we get information?- sally okun
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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
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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
PROPRIETARY & CONFIDENTIAL
Individual Experiences => Collective Knowledge
April 9, 2023 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
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
Lessons from the PatientsLikeMe Community
April 9, 2023 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
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
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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.”
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
April 9, 2023 PROPRIETARY & CONFIDENTIAL
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www.openresearchexhange.com
