The Nest is a play about health data, commissioned by the GMPSTRC and supported by the Wellcome Trust. This may not sound like promising material, but writer Rosie MacPherson and theatre company SBC have crafted a touching and funny piece about the changing relationship between parent and child, deftly addressing along the way our complex and often ill-informed attitudes to personal data.
I’m introducing a couple of performances of the play this week and chairing a post-show debate. Last night’s audience was a mix of professionals attending the Informatics for Health conference and the general public.
Pay for your privacy
What intrigued me most from the debate was the conversation about the trade-off between commercial interests and health. The audience was largely amenable to giving their intimate health and behavioural data over to advertisers, if this would help fund a system that monitored their health.
Perhaps I shouldn’t be surprised. This is not a major leap from the trade-off with which billions of us around the world have become very familiar: sharing intimate information with Facebook in exchange for the platform it provides for that global conversation. But the level of monitoring depicted in the play is much greater: every move, purchase, utterance — even the contents of the fridge.
What concerns me is the extension of the rich/poor divide to cover our right to privacy. Clearly, the wealthy can already buy greater privacy. But allowing advertisers intimate access to your home in return for maintaining your health somehow seems more icky than trading off privacy against less fundamental services like messaging or photo sharing — or the ability to control your home with your voice.
A right to health?
I guess it’s about what’s at stake. Our National Health Service presents at least the idea — albeit unmatched in reality (or law)— that everyone has an equal right to good health. For those who can’t pay to eliminate the intrusion to have to give up their privacy, in return for equivalent support, just feels wrong.
The evidence from the audience is that I am unusual in this concern. But what the audience also accepted is that we are all uninformed consumers of these services. Will we give away our privacy before we get informed about the consequences? Only through more efforts like The Nest will we really open up the conversation beyond the industry professionals and into the wider public.