been effective, and so forth.

This is information that people

who have just been prescribed a drug are anxious to see.
Its members can also interact directly with each other
regarding their experiences. For example, Carbidopa-
Levodopa is a drug commonly prescribed to Parkinson’s
disease patients. Someone named “Mary O.” may have
reported on her profile that “When I first started taking
Carbidopa-Levodopa it made me sleepy, but over time my
body adjusted and I no longer have that side effect.” If
you’ve just been prescribed Carbidopa-Levodopa, you can
send a message to Mary O. and ask her, “How sleepy did
you get? Was it so bad you couldn’t go to work? How long
did it take before your body adjusted? Did you try
caffeine? Did it help?” Mary O. would then respond and
answer the questions. In addition, as a result of this
exchange, you and Mary O. may start to regularly
correspond, and Mary O. may become for you an
important source of information and support.
What’s remarkable about PatientsLikeMe’s value
proposition is that the information its members
exchange and the manner in which it aggregates and
displays data isn’t available anywhere else. The manner
in which its members are willing to be transparent about
very personal health-related issues is also compelling.
Revenue Drivers
Although its services are free to users, PatientsLikeMe is
a for-profit entrepreneurial venture with two primary ways
of making money. First, it sells aggregated medical data
to members of the medical community, like drug
companies, medical-device companies, and health care
providers. For example, the aggregate data of how
Parkinson’s disease patients are reacting to a particular
medication would be of interest to the company that
makes that medication. The sharing of this information
then circles back and helps patients. For example, if the
maker of the Parkinson’s drug finds that a large
percentage of people who take the drug experience
fatigue, the drug can potentially be tweaked to remedy
that issue. For patients, not experiencing fatigue as a side
effect of the drug may not only translate into feeling
better, but may mean less days missed from work or even
being able to maintain a job rather than having to quit.
Because of these types of outcomes, most patients are
eager to have their personal data included in larger
databases and passed along to companies in the medical
industry. Finally, their experiences and their voices
become part of the data that medical companies study
when making decisions about patients and their care.
The second way PatientsLikeMe makes money is by
helping pharmaceutical companies enlist participants in
drug trials and studies. For example, 5 percent of all the
people in the United States that have ALS (Lou Gehrig’s
disease) are PatientsLikeMe members. That’s a large set of
people who can be asked whether they’re willing to participate
in an experiment or trial. Most people with a disease
like Lou Gehrig’s are keenly committed to doing everything
possible to find a cure for their disease. As such, they tend
to be quite eager to participate in experiments and trials.