Wednesday, 25 May 2016

Health data in high heels

The spark of the public

In less than 48 hours over 100,000 people signed a parliamentary petition to protest against women being forced to wear high heels in the workplace.  (I would give the exact number of hours but when I tried to get the data map all I got was a blank purple screen.)
An amazing & very rapid response.  The public, in my view rightly, got fired up about this one.  This got me thinking.  Why don’t we get fired up about other crucial areas that affect us.  Is it due to apathy, a lack of spark about the subject or just lack of information?
Take health care.  Take data.  They’re definitely not sexy.  They don’t (generally) involve photos of attractive young agency workers, or high heels.  And yet, without both of these things in combination - data about healthcare - we’d be living shorter, more painful lives.  And so would the next generation.  And the one after that. 
And yet, data makes headlines all of the time, it’s just that the headlines are usually one-sided and give a negative view of data use and breaches. They tend to give the impression that using patient data is dangerous.  YES IT’S TRUE – there is always a risk.  But there’s another side – the benefits.
Are we too stupid to be trusted?
Recently, there have been some headlines about Google’s DeepMind initiative with the Royal Free Hospital; a partnership to develop technology to better treat acute kidney injuries.  A partnership that involved DeepMind being given (not sold) access to patient records. 
Bottom line - the study is highly likely to benefit patients and ultimately save lives.  What is wrong is the lack of openness and transparency about the project.  Time & again it is this that makes the public & press (rightly) distrustful. 
Are we, the public, not to be trusted with the information up front?  Surely that is better than often erroneous headlines that scream of patient confidentiality being put at risk.
What can your data do for some-one who's not you?   
The government is keen for all patients to be able to opt in and opt out of healthcare consent.  Sounds great doesn’t it – give the individual power over their own affairs. 
BUT, does the individual know what the impact of freely opting in and out will be for society?  Who & what will ultimately be affected? For example without consistent routine collection of data we wouldn’t know:
1)       How and where people are diagnosed with cancer – we didn’t have the information until the publication of the Routes to Diagnosis study, by the National Cancer Intelligence Network.  Having evidence of the alarmingly high numbers of cancers that were diagnosed in A&E, changed the approach to diagnosis, reduced numbers of emergency presentations and saved lives.
2)       That there are at least two million cancer survivors alive today and that this number is rising.  Knowing the number of people living with and beyond cancer makes it possible to provide the services that they need. 
Turn on, tune in, opt out
What if the importance and the benefits of collecting health care data caught the imagination of millions?  What if it was totally ignored by millions? 
As the public do we know the far reaching impact of opting in and out of our healthcare? 
As a result of the aborted programme 2,690,709 patients (as at 17 May – the figure is increasing all the time) have opted out of their data being used -
How many of those know that their data are now being removed from many essential programmes of data collection. They have been given no way to opt back in.
Does this affect their current/future prognosis and treatment?  No.
Does it affect children/grandchildren/all future generations?  Yes.
 Do they know what they don’t know?  No.  Because no-one is telling them.  How informed is that?