Monday, September 28, 2009

Medicine 2.0® Congress - Official Blog: PatientsLikeMe

The PatientsLikeMe presentation was fascinating. Is the future one where Genomics and other data points move us to a world of personalized medicine, rather than mass medicine. 

Friday, September 18, 2009


Patients Informing Practice: Post-marketing Drug Data in PatientsLikeMe, a Patient-Centred Online Community
Speaker: Jeana Frost

Jeana Frost, winner of the JMIR Medicine 2.0 award 2009, presented research data collected from PatientLikeMe website.

Noting that drugs are often used off-label with limited clinical data, Jeana Frost presented an alternative approach to understanding drug use and effects using a patient-centred on-line platform called PatientsLikeMe. Using information shared on the social media, Jeana took experiences created in the community to generate quantifiable data.

PatientsLikeMe was started by two brothers who identified the need for a patient resource when one brother got ALS. The tool allows patients to share information on drugs, symptoms, answer patient questions, report efficacy on treatment. Jeana argued that "community knowledge can affect the treatment of the patient".

Using data from PatientsLikeMe, 602 treatment histories and 220 evaluations of amitriptyline were analyzed in five patient communities (MS, Parkinson's, Mood Conditions, Fibromyalgia and ALS). She found that 80% were using the drug for indications other than depression (depression is the drug's only approved indication). Users reported taking amitriptyline for pain, insomnia, excess saliva, depression (rank 4).

Jeanna noted that off label uses of drugs can sometimes be the drug’s side effects. Christine Thoer also made this comment when she presented her research yesterday at Medicine 2.0.

While credibility of user profiles takes effort and time to develop on PatientsLikeMe, according to Jeanna, I am not sure how data gathered from web identities can be used to generate statistically relevant results.

I also question the relevance of reports from five user communities (e.g., MS patients will amitriptyline for pain and not bed wetting). Even if the data was reliable, experiences from five communities creates a selection bias and can not be extrapolated to the larger population.

PatientsLikeMe can be a very useful patient resource and support tool. I agree that this forum could generate very useful information. Reports on patient experiences can be very important in areas where documented research is lacking. It can also uncovered side effects that that patients are less likely to report in clinical trials (sexual dysfunction). It may even inform and stimulate research, particularly if Pharma companies find creative ways to capitalize on the off-label use (e.g., buproprion, an antidepressant remarketed for smoking cessation).

For additional information, please see her abstract.


Plumaletta Berry said...

This was an interesting perspective on the use of social media for research. The credibility of the website is clearly established and would be interested to get the perspective from a representative from the pharmaceutical viewpoint on the viability of using this forum for research for which a boarder section of responses appear to be received outside of selection for clinical trials.


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