Live blogging from Medicine 2.0 - #Med2 - my stream of consciousness from the event.
PatientsLikeMe - A platform to:
- Share (detailed health data)
- Find (Others with similar issues/conditions)
- Learn (new information)
43,000 Patients and 50,000 members
Nine Conditions:
- MS
- Parkinson's
- ALS
- Fibromyalgia
- Primary Lateral Sclerosis (PLS)
- PSP
- Progressive Muscular Atrophy (PMA)
- CBD
- MSA
Interesting research on some drugs. Able to pull data from actual use.
People analyze side effects and burdens and are flipping use to solve issues with other diseases.
A unique data source for understanding use and experience across populations. This can be very useful for off-patent drugs - discovering new uses for existing drugs.
PatientsLikeMe are getting more complete reporting than occurred in clinical trials.
the size of the communities for PLS and PMA are about 4 times that of any previous clinical trial for these diseases.
Q: Does sharing help combat attrition.
A: The more community the more prolonged engagement.
