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
- Primary Lateral Sclerosis (PLS)
- Progressive Muscular Atrophy (PMA)
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.