Re: Patients Like Me

[Guest guest]

You might be interested in this white paper also -JackieFrom: edwinsmith2002 <edwin.smith3@...>Subject: [low dose naltrexone] "Patients Like Me"low dose naltrexone Date: Sunday, May 30, 2010, 9:13 PMThe Sunday New York Times in its Business section today has an article by Natasha Singer entitled "When Patients Meet Online, Are There Side Effects?", which explores what is going on behind the scenes of such "patient empowerment" web sites. You may visit www.nytimes.com to access the article, which I will let speak for itself. In

short, "Patients Like Me" markets information provided by patients to Big Pharma. Some readers may be reminded of Big Brother.

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e-Patients_White_Paper.pdf

[Guest guest]

It makes me wonder what is doing with our information - any ideas?JackieFrom: edwinsmith2002 <edwin.smith3@...>Subject: [low dose naltrexone] "Patients Like Me"low dose naltrexone Date: Sunday, May 30, 2010, 9:13 PMThe Sunday New York Times in its Business section today has an article by Natasha Singer entitled "When Patients Meet Online, Are There Side Effects?", which explores what is going on behind the scenes of such "patient empowerment" web sites. You may visit www.nytimes.com to access the article, which I will let speak for itself.

In short, "Patients Like Me" markets information provided by patients to Big Pharma. Some readers may be reminded of Big Brother. ------------------------------------

[Guest guest]

I am active on Patients Like Me (PLM). There are active LDN threads on PLM. A

couple of times a person seems lost about LDN, so I share my positive

experiences and refer them to this chat board.

What I like about PLM is the patient can write a profile with their symptoms and

treatments. The profile is handy to see how well other patients line up with my

experiences. I can use that to fine tune my answers.

The PLM search engine is a little klutzt and not as refined as the search engine

on the chat boards.

Here is a clip from the Patients Like Me website:

About PatientsLikeMe

Founded in 2004 by three MIT engineers whose collective experience spans from

running the world's only non-profit biotechnology laboratory to large-scale

online commerce applications, PatientsLikeMe is a privately funded company

dedicated to making a difference in the lives of patients diagnosed with

life-changing diseases. Our personal experiences with ALS (Lou Gehrig's disease)

inspired us to create a community of patients, doctors, and organizations that

inspires, informs, and empowers individuals. We're committed to providing

patients with access to the tools, information, and experiences that they need

to take control of their disease.

In 1998, a young carpenter named Heywood was diagnosed with ALS. The

Heywood family began taking charge of 's care, searching the world over

for ideas that would extend his life and improve the way he lived. This set in

motion a series of events that have led to PatientsLikeMe, a new system of

medicine by patients for patients. We're here to give patients the power to

control their disease and to share what they learn with others. We're here to

help you.

Our goal is to enable people to share information that can improve the lives of

patients diagnosed with life-changing diseases. To make this happen, we've

created a platform for collecting and sharing real world, outcome-based patient

data (patientslikeme.com) and are establishing data-sharing partnerships with

doctors, pharmaceutical and medical device companies, research organizations,

and non-profits. Contact us if you're interested in working together to achieve

our goals.

Our operating costs will be covered by partnerships with healthcare providers

that use anonymized data from and permission-based access to the PatientsLikeMe

community to drive treatment research and improve medical care. We only share

anonymized data with trusted partners and all our patient information is kept

safe and secure. For more information, read our privacy policy.

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> The Sunday New York Times in its Business section today has an article by

Natasha Singer entitled " When Patients Meet Online....