Download - Medicine 2.0 okun
Perhaps it would be a good idea, fantastic as it sounds, to muffle every telephone, halt every motor, and stop all activity someday to give people a chance to ponder a few minutes on what it is all about, why they are living and what they really want.
James Truslow Adams 1878 - 1949
Patient Engagement: Share, Find, Learn 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 conversa?on
Step 5: Play an integral part in your own health care
We needed more buckets
surgery
conditions
equipment
side effects
hospitalization
life events prayer pets
lab tests
yoga
Folksonomy meets clinical taxonomies
Patient voices: – Feel like a zombie – Feeling out of body – Goofy feeling – General yucky feeling – Spaced out – Feeling blank
Clinical concept: – Feeling abnormal
1 clinical concept mapped to 30 patient voice terms representing over 500 unique patients
Folksonomy meets clinical taxonomies Patient voices:
– Dragging foot – Stumbling – Limping – Bumping into things – Walking like a drunk – Funny gait – Walking problems
Clinical concept: – Gait disturbance
1 clinical concept mapped to 35 patient voice terms representing over 3000 unique patients
Unique interpretations & perspectives
Patient Voice • Punched my husband in
eye in my sleep
• Stimming
• Lucite-encased head
• Cheese-o-meter
Clinical Concept Abnormal sleep-related
event
Stereotyped repetitive movements
Derealization
Anhedonia
Data Prisons
• Separate admin tools to manage each type of data
• Unable to split compound terms • Unable to move data between these
tools • Collaborated with engineering team to
create robust user voice admin tool