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Panel: Where Do We Get Information?- Sally Okun
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Panel: Where Do We Get Information?- Sally Okun


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  • Published in “Epilepsy & Behavior”
  • Transcript

    • 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
    • 2. 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 3
    • 3. Individual Experiences => Collective Knowledge August 2, 2013 PROPRIETARY & CONFIDENTIAL 4  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
    • 4. 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
    • 5. Lessons from the PatientsLikeMe Community
    • 6. August 2, 2013 PROPRIETARY & CONFIDENTIAL 7 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
    • 7. 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
    • 8. 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.”
    • 9. 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 12
    • 10.
    • 11. To learn listen well to impressions voiced by patients first. Sally Okun