Date post: | 01-Nov-2014 |
Category: |
Health & Medicine |
Upload: | mid-atlantic-telehealth-resource-center |
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Sally Okun VP Advocacy, Policy & Patient Safety
Partnering with Patients to Increase Engagement & Improve Outcomes
@SallyOkun @patientslikeme
…harnessing the power of patient stories
Step 1:Create/update and share your health profile
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
Step 5:Play an integral part in your own health care
Patients Share, Find, Learn, Take Control
• Chronic condition
• Life changing / Life threatening condition
• Condition not well understood by the science of medicine
• Not completely happy with the care they receive today
• Engaged in their own care
• Need or desire to track their condition over time
• Comfortable sharing personal health information
• Want to tell their story
Persona-based design…one size does not fit all
Understanding the journey…
Having symptoms
Seeking diagnosis
Getting diagnosis
(that you believe)
Living with it
Optimizing & adjusting
Making sense of it
Finding a plan
Experiencing a change
• 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
…transforming patient stories into data
Matching Patient Data with External Data Sources
Aggregating Patient Experiences
13,50
0
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
7,50
0 86,500
Patient Voice: Capturing Real World Experiences
…learning together with our patients
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
Patient initiated inquiry…lithium use in ALS
Patient Powered Research: The Findings
New Open Science Initiative launching in 2013
behind every bit of data is a
patient’s story…