Sunday, March 23, 2008

What a Great Idea


I'm back from New York. We had a great trip, and now we get to return to our home, where apparently Everyone Who's Anyone is my neighbor! Roy will be moving next door shortly (I hope).

So I'm finally getting to today's New York Times magazine and I read an article by Thomas Goetz called "Practicing Patients." It's about an on-line medical community called PatientsLikeMe where people compare their treatments for a variety of neurologic and psychiatric disorders. People enter their treatments and chart their progress and therefore form a data bank of information. It was founded by the brother of a man who was ill for years with ALS.

Okay, so it's not 'controlled trials' and there's the risk that people will demand unproven treatments based on what they've read as anecdotes on-line (Goetz mentions ALS patients asking for Lithium based on information reported on the site), but what a great idea to get data on treatments, what works, what causes side effects, in a more real-life way. Research trials often eliminate Real people-- any one with a co-occuring illness, people with substance abuse problems, women who might get pregnant, children.

I surfed briefly. I didn't join. What a great idea.

5 comments:

gamboachuck said...

I am one of about 100 ALS patients that have taken the results from an admittedly small trial in Italy as the only good news we have had for potentially treating ALS. Hundreds of million of dollars have been spent on ALS research and nothing but one pharmaceutical was approved way back in the late 90's, riluzole, and it is thought to extend life by two to three months. It also costs $1,000 a month.

There have been all sorts of clinical trials and nothing has come out of them. The Italian trial followed animal model trials that gave promising results. Their human trial also gave promising results.

Those of us with ALS generally have only two to five years of life after diagnosis. We don't have the luxury of waiting for the research community to produce for us. We must take whatever promising results that are reported by credible researchers.

Dr. Pink Freud said...

What's exciting about this endeavor is fourfold:

1. Although patient self-report is notoriously unreliable, there is no real incentive to deviate from the truth in an anonymous form.

2. Potentially valuable information can be gleaned from "real world" patients.

3. The process of writing forces an individual to (hopefully) reflect more thoughtfully on what he/she has to say. This could promote more accurate reporting and perhaps lead the patient to a deeper level of insight regarding his/her condition.

4. There is likely a measure of social support to be gleaned from the experience, maybe even therapeutic.

Dr. Pink Freud said...
This comment has been removed by the author.
Dr. Pink Freud said...

What's exciting about this endeavor is fourfold:

1. Although patient self-report is notoriously unreliable, there is no real incentive to deviate from the truth in an anonymous forum.

2. Potentially valuable information can be gleaned from "real world" patients.

3. The process of writing forces an individual to (hopefully) reflect more thoughtfully on what he/she has to say. This could promote more accurate reporting and perhaps lead the patient to a deeper level of insight regarding his/her condition.

4. There is likely a measure of social support to be gleaned from the experience, maybe even therapeutic.

NeoNurseChic said...

I might just join. I eat up information on my conditions like it's candy, and maybe I'll learn something new. Thanks for sharing!