Sunday, March 23, 2008

Internet. ,Health Information Technologies -, An Internet Startup

I opened today’s March 23 Sunday New York Times Magazine to find “Practicing Patients.” It bears these subtitles “an Internet Startup, “ “Creates information-rich communities,” “It is the next step forward in medical science – or just a MySpace for the afflicted?’

Thomas Goetz, deputy editor of Wire Magazine,” wrote the piece. He describes how patients with degenerative neurological diseases – multiple sclerosis, amyotrophic lateral sclerosis, Parkinson’s Disease , AIDS– can talk to each other, compare notes, and regularly share information on dosage and treatments.

This article highlights the latest crazes on the Internet – easily accessible social networking websites for people with common concerns. MySpace and MyFace are other examples in the public domain, and in medicine, occupies a prominent spot.

The idea is to create structured communities, to build databases, to churn personal experiences into hard numbers, and to create personal exchanges, to be open, to accelerate research by gathering hard data to solve problems.

Thomas Goetz waxes enthusiastically on the power of information. So am I. These sites can build solid information bases quicker and earlier than traditional sources. The sites build hope. Yes, there may be privacy issues, but when you’re desperately ill, you may figure you don’t have anything to lose. Besides, when bundled into databases, private information can result in immediate and long term benefits and returns. And, for the drug industry, social networking sites for patients and doctors may a powerful shortcut to find what varying drug doses do for a larger population.

Of course, sites like PatientsLikeMe. com may build false confidence and hopes , produce unreliable information, and create a mistake-prone environment. It isn’t scientifically evidence-based double –blind controlled clinical trials. But it ‘s fast, understandable, and personal – and sometimes produces gratifying and constructive results.

On the other hand, chronic diseases tend to be incurable, none of us are going to get out of this alive, and there’s always gloom for improvement, even for DoctorsLikeMe.

1 comment:

Dr. Bonis said...

Take a look to my last project: a anonymous personal health record that will also provide some social-networking tools so patients can communicate between them and with doctors (second opinion).

We have solved the privcy problem with a simple approach: we are the first totally anonymous personal health record online.

We do not ask for names, emails... if confessors don't ask your name, why do we?