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Sally Okun VP Advocacy, Policy & Patient Safety

Sally Okun VP Advocacy, Policy & Patient Safety . Partnering with Patients to Increase Engagement & Improve Outcomes. @ SallyOkun @ patientslikeme. …harnessing the power of patient stories. Patients Share , Find, Learn, Take Control. Step 1:

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Sally Okun VP Advocacy, Policy & Patient Safety

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  1. Sally Okun VP Advocacy, Policy & Patient Safety Partnering with Patients to Increase Engagement & Improve Outcomes @SallyOkun @patientslikeme

  2. …harnessing the power of patient stories

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

  4. Persona-based design…one size does not fit all • Chroniccondition • Lifechanging/ Life threatening condition • Conditionnotwellunderstood by the science of medicine • Not completely happywith the care they receive today • Engaged in their own care • Need or desire to track their condition over time • Comfortablesharingpersonal health information • Wantto tell their story

  5. Understanding the journey… Experiencing a change Having symptoms Seeking diagnosis Getting diagnosis (that you believe) Optimizing & adjusting Living with it Finding a plan • Any stage might be minutes…or years • People can be in different stages with different diagnoses • First two stages don’t always happen • Planning / sense-making may overlap or be reversed Making sense of it

  6. …transforming patient stories into data

  7. Matching Patient Data with External Data Sources

  8. Aggregating Patient Experiences

  9. 13,500 Patient Voice: Capturing Real World Experiences 7,500 Patients have told us about more than seven thousand symptoms Patients have added more than thirteen thousand treatments 86,500 Patients have done over eighty-six thousand treatment evaluations

  10. …learning togetherwith our patients

  11. 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

  12. Patient initiated inquiry…lithium use in ALS

  13. Patient Powered Research: The Findings

  14. New Open Science Initiative launching in 2013

  15. behind every bit of data is a patient’s story…

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