Partnering with Patients to Increase Engagement and Improve Outcomes

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Presentation by Sally Okun, RN, MMHS, Vice President for Advocacy, Policy & Patient Safety, PatientsLikeMe

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  • Patients: >180,000Public: >17,000 (9.5%)
  • Out team undertakes a very intentional approach to condition development that includes ethnographic interviewing with members and non-members; connect with caregivers, clinicians and researchers
  • This slide shows the range of tools available to monitor and keep track important information including labs, the Multiple Sclerosis Rating Scale, history about treatments and symptoms. Laura’s comments:“Every patient should keep good records, and hard copies of everything…MRIs, blood tests, doctors’ notes. Most don’t believe they have the right to see them, much less ask for a copy. But its important so you can watch for trends and ask your doctor about them.Looking at my labs I can watch to see what’s changing, is that change good or should I discuss it with my doctor on my next visit. Or if I’m really concerned about it I can send an email and see what he says.”
  • Published in “Epilepsy & Behavior”
  • In 2008 a small study in 16 experimentally treated patients and 28 controls was published that suggested that the drug lithium carbonate, normally used as a mood stabilizer, could slow the progress of ALS, a terminal illness with an average survival time of 2-5 years. The blue line shows the treated patients stabilizing over 15 months and none of them died during this time. The red line shows the placebo group, and a third of them died during the same period.
  • What you can see here is the blue error bars show the progression of patients taking lithium off-label, the red error bars show the progression of patients who very similar but were not taking lithium - there's no significant difference. What the original study showed, probably because it was too small and underpowered, were these blue boxes here for the lithium and the purple boxes for controls. The sad thing is that even though we announced our findings very quickly. the scientific establishment went ahead with five randomized double blind placebo controlled trials; two in the US and two in Europe, and all of them were halted for futility. It took them about 3 years and some $30m to confirm what our patients had told us in such a short space of time. We published the study in Nature Biotechnology, uploaded our entire dataset, and described our matching technique in detail in case anybody wanted to check our figures.
  • Partnering with Patients to Increase Engagement and Improve Outcomes

    1. 1. Sally Okun VP Advocacy, Policy & Patient Safety Partnering with Patients to Increase Engagement & Improve Outcomes @SallyOkun @patientslikeme
    2. 2. …harnessing the power of patient stories
    3. 3. Patients Share, Find, Learn, Take Control Step 1: Create/update and share your health profile Step 5: Play an integral part in your own health care 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 conversation
    4. 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. 5. Understanding the journey… Experiencing a change Having symptoms Seeking diagnosis Getting diagnosis (that you believe) Making sense of it Finding a plan Optimizing & adjusting Living with it • 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
    6. 6. …transforming patient stories into data
    7. 7. Matching Patient Data with External Data Sources
    8. 8. Aggregating Patient Experiences
    9. 9. Patient Voice: Capturing Real World Experiences 7,500 13,500 86,500 Patients have told us about more than seven thousand symptoms Patients have added more than thirteen thousand treatments Patients have done over eighty-six thousand treatment evaluations
    10. 10. …learning togetherwith our patients
    11. 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. 12. Patient initiated inquiry…lithium use in ALS
    13. 13. Patient Powered Research: The Findings
    14. 14. New Open Science Initiative launching in 2013
    15. 15. behind every bit of data is a patient’s story…

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