May 10, 2011
In recent weeks The Wall Street Journal reported that the results of a new clinical trial into the effects of lithium on Lou Gehrig’s disease demonstrate the potential for social networks to be used in the recruitment and collation of patient data.
A total of 596 patients took part in the observational study by health social network, PatientsLikeMe, which concluded that lithium does not slow down the progression of Lou Gehrig’s disease.
PatientsLikeMe used a questionnaire and bespoke tool to collect the data and during the study, patients were able to visit the website and see how other participants were getting on in real time.
Through the use of a social network, the process of enrolling patients was sped up and the cost of drugs and recruiting patients was avoided, given that participants approached their own doctors for prescriptions.
It sounds marvellously promising, but Harvard Medical School ALS researcher, Merit Cudkowicz, has queried the danger in placing 100% trust in a social network clinical trial, highlighting that it wouldn’t pick up minor benefits lithium may have and it would be wrong to completely disregard the drug on the social study’s basis alone.
According to The Globe and Mail, a recent report published by Canadian researchers in science journal, Nature, also shows the power social media can have over the spread of a medical theory before it’s even been proven. Italian doctor, Paulo Zamboni’s unproven theory that MS is actually caused by malformed neck veins and can subsequently be treated has been heavily pedalled on social networks by MS patients. Health institutes may now be forced to change their health research spending as a result of patients having read word-of-mouth evidence via social networking sites.
There is clearly a place for social media as an aid to – but not a complete replacement for – medical research. But, it won’t work without medical experts and thought-leaders joining in the conversations to balance emotions with science; and without informative, reliable and optimised content filling the search engines.