Disease, Data, and Privacy

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Disease, Data, and Privacy

Postby streetsense » Sun Mar 23, 2008 9:42 pm

I was reading the New York Times this evening and came cross an interesting article. It discusses a relatively new website called PatientsLikeMe.com.

http://www.nytimes.com/2008/03/23/magaz ... f=magazine

Like this forum itself, this internet start-up show promise to help those with diseases that are rare, so it could be potentially beneficial for those like us who suffer from SM and CM. It was started be a fellow whose brother suffered (and died) from ALS.

On the other hand, the data collection through self-identification and reporting raises significant issues of privacy. Their business model seems centered on selling the data to pharmaceutical and other medical companies. However, the concept is intriguing.

So far, besides ALS, they have communities of patients who suffer from HIV, Parkinson's and MS, and recently added mood disorders.

I searched under syringomyelia. There are three users registered with SM, but this doesn't yet seem to provide a large enough sample to establish a "community," as they call it, as they have with the syndromes noted above..

http://www.patientslikeme.com/search?q= ... lia&t=user

Many of the things that the site does mirror what we do here more informally. The concept may be one to watch or emulate in some ways.

I wanted to bring it to everyone's attention, as it seems worth discussing given the potential benefits that the internet has for those like us who can gain from seeking out others who suffer similarly and who can give advice to each other.

I have mixed feelings about the loss of privacy that occurs with such MySpace-like sites, even if there are potential benefits. The subtle (and obviously not always complete) anonymity here gives one the freedom to discuss issues that less privacy might cause many to hold back.

What do others think about this?
streetsense
SM 7mm T-5 to T-10 with less clearly defined extension down through the lumbar vertebrae
sleep apnea
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Postby Vagreeneys » Sun Mar 23, 2008 10:39 pm

I personally perfer here not sure i would want to join a site as such but never know let us know how it is.....haha
SM Syrinx c-5 to t-3 DDD t-10 and t-11 L-4 and L-5
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Postby streetsense » Mon Mar 24, 2008 10:35 am

hc,
Thanks for your useful insights. HIPAA has some minor drawbacks for research, but I think is a good model for stripping out personally identifying info to allow the essential data to be used.

The existence of databases like the one you mentioned used by insurance companies is a very worrisome trend. If these were kept and primarily used to benefit patients, it would be one thing. Unfortunately, they are mostly used to deny care, rather than to facilitate it.

Until patient care becomes the greatest priority in our healthcare system and profit is no longer the prime directive as it often is now in the U.S., the cautious approach -- and maintaining the privacy of our identifying date -- will remian very important.
streetsense
SM 7mm T-5 to T-10 with less clearly defined extension down through the lumbar vertebrae
sleep apnea
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streetsense
 
Posts: 535
Joined: Mon Dec 10, 2007 10:31 am
Location: The Flatearth Midwest


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