Donna Cryer -
How can we make patient advocacy more like the movie Avatar.
What made Avatar so great:
1. Great stories
2. Cutting edge technologies
3. Immersive Experience.
1D - In health care the first dimension is the 1 day visiting on the hill to Congress.
2D - Discovery of Bulletin Board of transplant recipients. Using patient shared information to change clinical care. This is now common place.
2D - What is the recipe for the next phase:
Traditional Advocacy + Technology + EPatients. = New Model of Policymaking
Brian Loew & Thomas Sawyer
Thomas Sawyer, a bladder cancer survivor, tells a story of an incident with the TSA when traveling through Detroit.
Patients have real power and can change public policy.
Kelly Young - @RAWarrior
Rheumatoid Arthritis sufferer.
Nothing prepares you for the ill defined cruelty of RA.
Patients should be engaged in developing tests to assess complex diseases.
Patient input makes sense for clinical trials
Patient input in advertising
Patient generated data should be used to create drug data sheets.
Researchers can collect patient data for benefits - but not side effects.
I was struck by RAWarrior 's expression of Diabetes "Tight Control leads to improved mortality" Just think of the bizarre wording so typical of the health industry