Dr Sarah Fox blogs about CHC’s interactive health data game
A deadly virus is spreading and no-one is safe. One by one you see your friends and neighbours don their oval sun glasses, salute the sky and fall to the floor clasping at their ears in agony….
But, maybe you’re gonna to be the one that saves them?
Yes, this isn’t like any virus you’ve seen before. This virus attacks victims’ brains, activating Broca’s 90’s music circuit and leaving sufferers unable to shake the Brit Pop classic Wonderwall from their heads. And you thought Liam and Noel couldn’t get any more pervasive….
Believe it or not this scene is not the start of a low budget horror movie, it’s actually the set up for a game communicating the importance of health research and data sharing.
Perhaps, while watching your GP type up your notes on their PC, you’ve wondered what happens to this information, where it’s stored and who has access to it? Well, these electronic patient records do more than just sit on a doctor’s PC, they hold a wealth of possibilities and pitfalls waiting to be unleashed.
Optimists and dreamers may recognise the power that dwells within these records. Knowledge of different treatments, successes, failures and diagnoses can all be linked up, pawed over and analysed to build a better, more streamlined health care system and to develop new cures – indeed, this research could go on to save countless lives. But, and there’s always a but, to reap the benefits of this big health data, our best and brightest minds must be afforded access to this information; arguably the most personal and private information we could ever share – our health records.
So, how do you feel about sharing your medical records to improve healthcare for yourself and others?
This is where we return to the land of impossible viruses and mind-bending musical therapies.
The scientific and ethical considerations underpinning the data sharing debate are complicated but, studies have suggested that public trust in data sharing increases if people are given an opportunity to engage thoroughly with the topic and to listen to arguments on both sides of the debate. However, the days of dialogue and discourse required to impart all necessary information on this subject are not feasible to deliver en-masse.
Authors
Sarah Fox, PhD
Public Involvement & Engagement Practitioner