Here is the actual press release from PatientsLikeMe:
Nature Biotechnology Paper Details Breakthrough in Real World Outcomes Measurement
CAMBRIDGE, Mass., April 25, 2011
Today, PatientsLikeMe reveals the results of a patient-initiated observational study refuting a 2008(1) published study that claimed lithium carbonate could slow the progression of the neurodegenerative disease, amyotrophic lateral sclerosis (ALS). PatientsLikeMe, a health data-sharing website with more than 100,000 patients and 500+ conditions, announces its study results in the journal, Nature Biotechnology.
“This is the first time a social network has been used to evaluate a treatment in a patient population in real time,” says ALS pioneer and PatientsLikeMe Co-Founder Jamie Heywood. “While not a replacement for the gold standard double blind clinical trial, our platform can provide supplementary data to support effective decision-making in medicine and discovery. Patients win when reliable data is made available, sooner.”
After the original claim was published by the Proceedings of the National Academy of Sciences, 348 ALS patient members reported their off label use of lithium on PatientsLikeMe. Just 9 months later at the International ALS/MND Symposium, PatientsLikeMe presented preliminary results that lithium was not having an observable effect on the disease progression of these patients. The results were revealed before any of the formal follow up trials enrolled patients.
PatientsLikeMe developed a novel algorithm designed to match patients who reported taking lithium with a number of other ALS patients that had similar disease courses. By using a matched control group, PatientsLikeMe was able to reduce biases associated with evaluating the effects of treatments in open label, real world situations and improve the statistical power of the study making each patients contribution more meaningful.
Heywood adds, “The rising costs of healthcare and increasing complexity of managing disease require new approaches to comparative effectiveness research and real time management of disease. While there is much work to do, we have demonstrated a patient-centric approach that provides dramatic cost and time advantages.”
Nature Biotechnology has made the final publication, titled, “Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm,” available for free to the public on its website (DOI: 10.1038/nbt.1837).
(1) (Fornai et al., “Lithium delays progression of amyotrophic lateral sclerosis.”
Proc Natl Acad Sci U S A. 2008 Feb 12;105(6):2052-7.)About PatientsLikeMe
PatientsLikeMe® (www.patientslikeme.com) is the world’s leading online health data sharing platform. PatientsLikeMe® creates new knowledge by charting the real-world course of disease through the shared experiences of patients. While patients interact to help improve their outcomes, the data they provide helps researchers learn how these diseases act in the real world and accelerate the discovery of new, more effective treatments.
We are all aware of the power of social networking in numerous arenas, but this is taking it to a whole new level. Smart businesses are now understanding the power of social networking. I have participated in all kinds of surveys and focus groups but social networking provides an unfettered opinion from the people that are actually using products. People write exactly what they are thinking without any consideration of what a company wants to hear.
Healthcare companies would be stupid not to take advantage of this free information. Like they said in the press release, this is not a replacement for true clinical trials, but it does provide worthwhile supplementary data for people to consider. As a regular person, the information from a clinical trial can be as easy to understand as a foreign language, but being able to read exactly what other people are saying can help you understand the information. Why do you think company review sites are so successful?
I’m not too clear on their methodology. They don’t give much information on how they found the matched patients, nor do they validate this method’s reliability against double blind studies. I think that patient reported data can be important, but its self selecting nature makes it subject to close review.
You are absolutely right that this is not a stand alone type research tool, but it does provide a valuable alternate view to the science. Sometimes we get too wrapped up in the science and completely ignore the facts that we can see right in front of our face. It is at least worth a serious look as to how it could be implemented to compliment the actual clinical studies.