Changing How the World Thinks

An online magazine of big ideas

Trust Me, I'm Google

Could social media be good for our health? Victoria Lambert explores.

1 codinghorror.com

Move over Dr Google, there’s a new junior doctor in town: Dr Twitter. And he’s throwing up a new set of challenges connected to digital media and healthcare.

Medics and patients seem to have become two of the most natural groups of tweeters – perhaps it’s those long hours in waiting rooms for the latter, ease with beepers for the former. The combined cohort can dominate Twitter with discussions about treatment and patient care. And an example of this at its best is the campaign like #hellomynameis initiated by Dr Kate Granger, a doctor who has terminal cancer, and is using her experience to better care for all patients.

Meanwhile, hospitals are tweeting everything from jobs to what’s happening in A&E. NHS Blood and Transplant can send out tweets when they are running low on blood stocks and get an instant and fantastic response. Drugs companies are reaching out beyond their natural audience straight into consumers’ timelines. Lifestyle healthcare companies are advertising their products and hoping for the holy-of-holies: a campaign that goes “viral”. And health journalists and policy makers, politicians and NHS managers, scientists, think-tanks and charities are also weighing in with their views on NHS change and the direction of healthcare.

You might think this sounds much like a lively day in any hospital in the world: converging conversations available to anyone who wants to dive in. Not necessarily.

Twitter in particular throws up some interesting challenges, two of the most interesting being authority and privacy.

First, does it matter who’s handing out information? Yes, especially given that much happens across Twitter by stealth. It’s easy to spot a spoof account – who can resist @Jeremy_Twunt, the ‘’alter ego & inner voice of Jeremy Hunt (But not, for the moronically litigious, his actual voice)’’ – but the real stealth marketing and PR is harder to pick up. 

Consider how much effort Big Pharma is putting right now behind the scenes to work out how to leverage its power. Of course there are already codes and rules over medical advertising, but with social media, the speed of change is so fast, inevitably those rules and codes tend to follow in the wake of events.

And watch what happens when National Institute for Health and Clinical Excellence (NICE) turns down the next “wonder” drug for a common but devastating condition in a year or two. So far on Twitter there has yet to be a big outcry over the availability of one specific drug, as happened with Herceptin, Lucentis and Avastin a few years ago, but which played out via terrestrial media. That next drug which the public decides it wants will be subject to some explosive publicity on Twitter in ways we can’t yet imagine.

To give some idea, think of a cancer drug which has promise but is hugely expensive, so the government turns it down (even if only for more consultation). Then picture the millions of potential advocates easily reached across Twitter and other social media sites. A smart PR could raise an army of outrage - such as the global cancer family - online under a banner of unimpeachable honour. It would be very hard to refuse or resist. But not very democratic. Or even possibly in the best interests of the whole community’s need for affordable healthcare.

Twitter has a loud voice, but it is not necessarily an informed one. Crowdsourcing via Twitter can be a useful barometer of opinion, but no one should base policy on its collective views.

This type of social media is also part of the wider debate about our attitudes to privacy. Younger generations don’t seem to be as worried about privacy as older ones. In the debate (or lack thereof) over state surveillance, there are complaints that younger people are not showing enough interest in or understanding of the issue. Yet, in reality, having grown up with Facebook, perhaps teenagers and twenty-somethings are simply less interested in the concept of privacy than their parents.

How does that play out in online health? The medical establishment is very good about patient confidentiality in the real world. But online it’s easily broken.

Firstly, there is the question of invasion of privacy. Would you walk into a bar and loudly announce your cancer/HIV/arthritis/mental health? Unlikely, and often for good reason. Over sharing is an anthropological taboo. We don’t tell strangers intimate secrets as admitting a weakness can give them power over us. Kings hid the truth about illnesses as a matter of policy to protect the state from invaders or pretenders to the throne. 

We don’t necessarily want out boss to find out we have a chronic condition, in case he decides to use it as an excuse to fire us. We don’t admit to weakness in case it deters future lovers. On a practical level, we may worry about insurance or mortgages. Yet on Twitter, there is an awesome peer pressure to lower any taboo and over-share.

Hospitals, too, have fallen into similar traps. In efforts to be noticed on Twitter, more than one has chosen to “live-tweet” a day in their operating theatres or A&E, only to later be criticized for breaking patient confidentiality or even bullying as they “shame” patients who come for help with minor injuries or health issues which should be solvable at a pharmacy or GP.

Several celebrity docs even seem to hold regular one-line clinics on Twitter. It may be interesting to watch, but 140 character cod-solutions are a long way from a thoughtful face-to-face consultation.
Of course, taboo busting has its place. When a woman live-tweeted her miscarriage, as many people applauded her honesty as were horrified by the details. Others are happy to stand up and admit to mental illness, from depression to bipolar disease and more, as a way of showing how common these conditions are.

But you can’t audit Twitter. Who is telling the truth? And who just got carried away by the desire to show solidarity? Will comparing notes on individual cases of depression or arthritis really improve healthcare? Or is it, in the odd case, a bit narcissistic. Are we witnessing a form of competitive suffering?

And if so, what does this over sharing and attention seeking on Twitter say about healthcare in the UK? Could it be that the medicine all of us want, and perhaps most need, is simply more time to be listened to?

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