Last Sunday it seemed like the whole of Silicon Valley stopped work to watch the Oscars (on-line of course) otherwise known as the 83rd Academy Awards. Overall, the impression was that it was a pretty limp affair with only one F-word, robotic presenters, and bland acceptance speeches. The botoxed fashionistas were particularly scathing about the stars’ couture on the red carpet and once the ceremony was over interest rapidly switched to following the dalliances of Charlie Sheen and his eclectic “friends.” However, the most interesting and hilarious comments during the Oscars were on the live stream from Twitter. Comments came fast and furious throughout the ceremony and have continued ever since. Isn’t modern technology wonderful?
Meanwhile, on the radio, the Californian behemoth health maintenance organisation (HMO), Kaiser Permanente, are making major play of the fact that they are a “connected” organisation in that they believe that the internet might be useful for health care. Over here Kaiser have created a web portal that allows patients to check their blood test results, make appointments, provide educational material, and email their personal healthcare professionals. Unsurprisingly, the folks in the blogosphere are rather scathing of this organisation’s late love affair with the world wide web but it does seem to have some merit given that their patients are actually using it. Whether this idea will take off in the UK remains to be seen. Quite how many clinicians use email to communicate directly with their patients or how many hospitals or GP surgeries have their own Facebook page is unclear. At present, resistance to embracing technology for delivering health care is invariably based around concerns about confidentiality, even though increasing numbers of patients seem to be quite comfortable about sharing their intimate secrets with the rest of humanity. Nevertheless creating a secure cloud computing system for the new GP consortiums is appealing and might even reduce the burden on hospitals by reducing the need to refer and even lower hospital readmission rates if some form of social media is included.
The real time feedback that websites such as Twitter and Facebook offer might also be a gold mine for clinical research. Up until now, most manufacturers of new and me too therapies have relied on studies using surrogate end points for registration purposes and to persuade us that their latest product is the best thing since sliced bread. Recently the rosiglitazone saga has changed the regulatory landscape forever so that outcomes-that-matter-to-patients is now de rigeur and the only primary end point that matters in new clinical trial protocols. Nowadays there is general agreement that logging patient perceptions and documenting adverse events is critical in evaluating any new therapy as well as reporting clinically relevant primary end points. However, much of the trial data is collected at predetermined visits by research subjects and relies on an individual’s memory to document adverse events to provide personal feedback of the effectiveness or otherwise of a drug or device.
I wonder what a local ethics committee would make of an investigator including social media in a clinical trial protocol? Just think of the information that could be obtained by encouraging patients to “tweet” their feelings, mood, complaints etc during participation in a clinical trial. This would have the potential to log adverse events as they happen and to capture a wealth of subjective data. Sharing the information with fellow participants might also alert them immediately about the potential for serious adverse events. At the very least there is likely to be raw honesty from today’s “bare all” generation and the language will be jargon free although there is the possibility of a few colourful expletives and use of regional vernacular! Perhaps this would be no bad thing. Who knows, research subjects could also be allowed to give a Facebook type thumbs up or thumbs down to the study drug. If this idea takes off we might start discussing and predicting Oscars or rotten tomatoes for new medicines. This idea is likely to give marketing experts indigestion or a few sleepless nights. Here in the Valley one can already feel the collective wince of Big Pharma.
David Kerr is the managing editor of the Journal of Diabetes Science and Technology.