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TMFHelical (98.71)

Is Social Media a Healthcare Gamechanger?

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April 28, 2011 – Comments (1)

I think it will be for some.  Certainly those who are active with social media and concerned for their health are empowered by solcial media and information on the web.  As for providers of healthcare, their role as a 'source of truth' (to quote Toffler) will be diminished, and they won't like that.  But here too, informed conversations can only lead to a better healthcare service.

And companies, well, they have more to be concerned with IMO.

With that in mind it was with great interest that I read a story recently in the news.  It isn't often that I read a news blurb and immediately think it has implications beyond its simple communicaiton of what occurred.  One example is the report a year ago on the clinical studycomparing Plavix to Effient, run not by big pharma but by Medco and Aetna, which I commented on and has colored the investment decisions in my Helical port.  This recent news is similar, but different, in that it reports on a clinical study of sorts, run via social media.

The article from Nature Biotechnology sounds quite dull:

Accelerated clinical discovery using self-reported patient data collected online and a patient-matching algorithm

The report talks about how chatter on the social media site PatientsLikeMe led to the site conducting a study using self reporting.  At question was whether litium was beneficial to patients with ALS.  A very small prior study, and later anecdote, implied it possibly could be.  Not surprisingly, the ALS patients group used over whether there was or was not a benefit, and did anyone have any information / experiences to share.  The website gathered self reported information from participating patients at the bequest of the patients, and published them.  The study did not sadly indicate a benefit, but the technique has large implications in my opinion.

I'm not alone in this.  Here is what The Wall Street Journal (online) had to say:

ALS Study Shows Social Media's Value as Research Tool

Implications are large in my opinion.  Not just for things like branded drugs, but also for neutraceuticals, functional foods, behavioral change, etc.  Most illnesses, especially the dire, have their share of hucksters promoting the anecdoatal benefits of non regulated  items from magnets to mushrooms.  These could be evauated in this fashion by patient group, and either become the basis for further more rigorous study or de-anecdoted (if that makes sense).  And yes, prescription drugs like lithium can be considered as well, as can any drug use, particularly off-label considerations.

The FDA has dragged its heals on providing industry guidance for the use of social media.  This is not an easy space to set broad policy.  On one hand, better patient information is a good thing to promote, and social media is a strong tool for it, but on the other, the infiltration of social media with a marketing message could push or mislead rather than inform patients.  Pharma's history of occasional irresponsible marketing, or at least pushing the limits of responsible, does them no favors here.  Infiltration could also add a bias to the study like the one done by PatientsLikeMe.  That would be a shame because I think gathing this kind of real patient feedback is extremely valuable and potentially transforming of healthcare.

TMFHelical

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1 Comments – Post Your Own

#1) On April 28, 2011 at 3:14 PM, TMFJake (77.95) wrote:

I agree whole heartedly.  My wife and I are very active in online autism communities in which parents upload lab results, share feedback on the efficacy of different nutritional therapies and pharmaceutical treatments.  The social media information we collect is much more valuable than what we receive from physicians, many of whom are at a loss for how to treat kids with autism, and/or are out there trying to fleece desparate parents.... 

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