Avoiding the X-factor in using social media for health research

Some of you may have picked up on this interesting study published by Nature Biotechnology and reported by the Wall Street Journal (headline: ‘ALS study shows calue of social media as a research tool’).

In what the Wall Street Journal describes as an early example of the role that social media might play in clinical trials, US patients with amyotrophic lateral sclerosis linked-in to the PatientsLikeMe website self-reported the benefits and side-effects of taking lithium using a questionnnaire devised by researchers. 

Lithium was shown to be an ineffective treatment but the study brings into sharp focus how social media could be used as an observational tool without supplanting more rigorous clinical trials.

I’m not aware of similar approaches in the UK although I will happily be corrected if someone out there knows of one or more.  Nonetheless it is an intriguing step on from how we have tended to see social media i.e. as a means of clinical trial recruitment.  Indeed, it might also assist in keeping the carbon footprint of trials to a minimum.

Equally, Iwas fascinated to see this report from the Vancouver Sun (prompted by an article in Nature) about how patients are using social media as a lobbying tool for influencing research priorities.  It cites the controversey over the so-called ‘liberation treatment’ for MS as an example. 

The researchers behind the Nature article state: ‘When patient groups are using social media to advocate and mobilize, scientists must use similarly effective tools to communicate.” And it is worth pointing out that the MS Society here in the UK won our Science Communication Award this year for just that – the openness with which it engaged in this difficult debate using Facebook.
 
While doing some background for this blog I stumbled across this posting on ‘Pharma Strategy Blog’ which provides a really useful summary of the emerging methods for using social media in clinical trial recruitment.  But it was written in 2009 and I am sure that much has moved on from this.  If only I had time to write a proper update.
 
Back to the Vancouver Sun. 
 
I have nothing wrong with the use of social media as a vehicle for influencing debate and setting up lobbies of one sort of another for a particular cause – indeed I have done it myself and will undoubtedly do it again. 
 
But we must also be aware of the potential dangers of using social media to submit research, science, as well as many other endeavours for that matter, to the sort of superficial treatment best left to the X-factor.  I think there was even a suggestion in one of the pieces I read, that it could be used by people to vote for priorities. 
 
I am afraid if we do that, social media will cease to be the empowering tool for patients and researchers for which it shows considerable promise.

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