Medicine 2.0 - September 15, 2012

Patient Voices: The Power of Shared Knowledge

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 started with two buckets…

Symptoms Treatments

We needed more buckets

surgery

conditions

equipment

side effects

hospitalization

life events prayer pets

lab tests

yoga

Creating a Patient Vocabulary

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

鼠標手 = mouse hand

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

Prison break – one bucket, multiple options

User Voices

User Voice Dashboard Options

Evolving and Expanding Synonymy

Organizing the Power of Patient Voices

Individual Stories Shared Knowledge

Patient Voices: Listen well

To learn listen well to impressions voiced by patients first. - sally okun, 2010