Med Patient Social Networks Are Better Scientific Institutions

Liron

46 Med Patient Social Networks Are Better Scientific Institutions

19th Feb 2010

2 min read

46

When you're suffering from a life-changing illness, where do you find information about its likely progression? How do you decide among treatment options?

You don't want to rely on studies in medical journals because their conclusion-drawing methodologies are haphazard. You'll be better off getting your prognosis and treatment decisions from a social networking site: PatientsLikeMe.com.

PatientsLikeMe.com lets patients with similar illnesses compare symptoms, treatments and outcomes. As Jamie Heywood at TEDMED 2009 explains, this represents an enormous leap forward in the scope and methodology of clinical trials. I highly recommend his excellent talk, and I will paraphrase part of it below.

Here is a report in the Proceedings of the US National Academy of Sciences (PNAS) about Lithium, which is a drug used to treat Bipolar disorder that a group in Italy found slowed ALS down in 16 patients. When PNAS published this, 10% of the patients in our system started taking Lithium, based on 16 patients' data in a bad publication.

This one patient, Humberto, said, "Can you help us answer these kinds of treatment questions? I don't want to wait for the next trial; I want to know now!"

So we launched some tools to help patients track their medical data like blood levels, symptoms, side effects... and share it.

People said, "You can't run a clinical trial like this. You don't have blinding, you don't have data, it doesn't follow the scientific method -- you can't do it."

So we said, OK, we can't do a clinical trial? Let's do something even harder. Let's use all this data to say whether Lithium is going to work on Humberto.

We took all the patients like Humberto and brought their data together, bringing their histories into it, lining up their timelines along meaningful points, and integrating everything we know about the patient -- full information about the entire course of their disease. And we saw that this orange line, that's what's going to happen to Humberto.

And in fact he took Lithium, and he went down the line. This works almost all the time -- it's scary.

So we couldn't run a clinical trial, but we could see whether Lithium was going to work for Humberto.

Here's the mean decline curve for the most dedicated Lithium patients we had, the ones who stuck with it for at least a year because they believed it was working. And even for this hard core sample, we still have N = 4x the number in the journal study.

When we line up these patients' timelines, it's clear that the ones who took Lithium didn't do any better. And we had the power to detect an effect only 1/4 the strength of the one reported in the journal. And we did this one year before the time when the first clinical trial, funded with millions of dollars by the NIH, announced negative results last week.

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46 Med Patient Social Networks Are Better Scientific Institutions

by Liron

19th Feb 2010

2 min read

46

When you're suffering from a life-changing illness, where do you find information about its likely progression? How do you decide among treatment options?

Here is a report in the Proceedings of the US National Academy of Sciences (PNAS) about Lithium, which is a drug used to treat Bipolar disorder that a group in Italy found slowed ALS down in 16 patients. When PNAS published this, 10% of the patients in our system started taking Lithium, based on 16 patients' data in a bad publication.

This one patient, Humberto, said, "Can you help us answer these kinds of treatment questions? I don't want to wait for the next trial; I want to know now!"

So we launched some tools to help patients track their medical data like blood levels, symptoms, side effects... and share it.

People said, "You can't run a clinical trial like this. You don't have blinding, you don't have data, it doesn't follow the scientific method -- you can't do it."

So we said, OK, we can't do a clinical trial? Let's do something even harder. Let's use all this data to say whether Lithium is going to work on Humberto.

We took all the patients like Humberto and brought their data together, bringing their histories into it, lining up their timelines along meaningful points, and integrating everything we know about the patient -- full information about the entire course of their disease. And we saw that this orange line, that's what's going to happen to Humberto.

And in fact he took Lithium, and he went down the line. This works almost all the time -- it's scary.

So we couldn't run a clinical trial, but we could see whether Lithium was going to work for Humberto.

Here's the mean decline curve for the most dedicated Lithium patients we had, the ones who stuck with it for at least a year because they believed it was working. And even for this hard core sample, we still have N = 4x the number in the journal study.

When we line up these patients' timelines, it's clear that the ones who took Lithium didn't do any better. And we had the power to detect an effect only 1/4 the strength of the one reported in the journal. And we did this one year before the time when the first clinical trial, funded with millions of dollars by the NIH, announced negative results last week.

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LauraABJ16y260

Something like this is useful for the types of data points patients would have no reason to self-deceive over, however I worry that the general tendency for people to make their 'data' fit the stories they've written about themselves in their minds will promote superstitions. For example, a friend of mine is convinced that the aspartame in diet soda caused her rosacea/lupus. She's sent me links to chat-rooms that have blamed aspartame for everything from diabetes to alzheimer's, and it's disturbing to see the kind of positive feed-back loops that are created from anecdotes in which chat members state a clear link exists between symptoms and usage. One says, "I got symptom X after drinking diet soda," and another says, "I have symptom X, it must be from drinking diet soda!" and another says, "Thanks, after reading your comments, I stopped drinking diet soda and symptom X went away!" In spite of chat rooms dedicated to blaming diet soda for every conceivable health problem and the fall of American values, no scientific study to date has shown ANY negative side effect of aspartame even at the upper bounds of current human consumption.

Another example of hysterical positive-feedback would be the proliferation of insane allegations that the MMR vaccine causes autism. I would guess angry parents who wanted to believe MMR caused their child's autism would plot their 'data points' for the onset of their child's symptoms right after vaccination.

A site like this one may allow certain trends to rise out of the noise, but we must not forget the tendency people have to lie to themselves for a convenient story.

PhilGoetz16y110

In spite of chat rooms dedicated to blaming diet soda for every conceivable health problem and the fall of American values, no scientific study to date has shown ANY negative side effect of aspartame even at the upper bounds of current human consumption.

And in spite of those studies, I get a terrible splitting headache within minutes of drinking a diet soda containing aspartame.

I'm in the middle of preparing a proposal that explains one way in which all previous aspartame studies are flawed. Sorry, not going to explain it now. Aspartame studies are ac... (read more)

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