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

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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…