Friday, September 18, 2009

#Med2 - Patients informing Practice

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.