Crippled by fatigue and cognitive
dysfunction I withdrew completely. The
toll on my family was immense. It was
as if I became the insect of Kafka’s
I discovered I could no longer tolerate
bright lights or loud noise. All I could
do was lie alone, in the dark, inside a
quiet room.... I was extremely lonely
and extremely scared.
101 euphemisms for
all in your head
histrionic personality disorder
How do I...
find generic medications?
cut up my pills?
find wheelchair accessible buildings?
talk to my family about my illness?
find food without additives?
manage a side effect?
appeal an insurance denial?
get leave of absence w/o losing job?
Evaluating a social network
1. Is the site a pleasure to use?
2. How many patients have X?
3. What is the funding model?
4. How is the site moderated?
5. What is the mood?
6. What tools are available?
What is the business model?
We take the information patients share about
their experience with the disease, and sell it in a
de-identified, aggregated and individual
format to our partners (i.e., companies
that are developing or selling products to
patients). These products may include
drugs, devices, equipment, insurance, and
medical services. We do not rent, sell or
share personally identifiable information
for marketing purposes or without explicit
- PatientsLikeMe statement on funding
1. Are they paid or volunteers?
2. What are their credentials?
3. Is the site actively moderated?
4. Do they enforce expectations?
Image: New York Times Source: BMJ, 2008;337:a2338
2. Track personal progress
3. Find similar patients
4. Data analysis
New technologies inevitably become
integrated into patient care.
That it [the stethoscope] will ever come
into general use, notwithstanding its
value, I am extremely doubtful…. there is
something even ludicrous in the picture of
a grave physician formally listening
through a long tube applied to the
patient's thorax, as if the disease within
were a living being that could
communicate its condition to the sense
Sir John Forbes, 1821
We had a patient who read on her
cousin’s Facebook page that we had
helped heal a diabetic foot ulcer. This
patient came from 200 miles away to
see if we can help her save her
remaining leg. She was told by local
physicians the leg had to be removed.
We think the wound is healable. The
fact is most patients choose a
physician based on word-of-mouth
information, and many many people
get this information via social