The challenges have proven great, but the benefit – of better patient outcomes and billions of pounds of savings – remains well worth winning says Olaf Lodbrok
This week after many months of increasing concern and intensifying hostile coverage the care.data programme was suspended.
The whole programme might now be in danger of being written off and many of the project’s opponents no doubt want to see that happen.
For the champions of care.data – particularly in NHS England – the episode has been a humbling experience.
It would be easy for the leaders of the stricken programme to hang their heads and accept a defeat. However easy this would be, it would be a grave abdication of their responsibility.
The prize that big data can achieve in healthcare – better patient outcomes – remains the same this week as it did last week.
This prize must not be forgotten.
Eyes on the prize
In an era where smartphones offer us information on where we will have to wait in traffic jams, we must ask why real time information on how long we might have to wait in urgent care centres is not similarly available.
We must demand to know why information already collected by the NHS is not put to use to tell patients and clinicians where NHS services might be able to improve.
‘We must demand to know why information already collected by the NHS is not put to use to tell patients and clinicians areas of improvement’
Research charities must be supported in articulating the benefits in innovation which big data undoubtedly brings about, against the sceptical voices ranged against them.
I should declare an interest. My employer, Reed Elsevier, is one of the world’s leading big data companies. We work across sectors to make the theoretical benefits of big data a reality.
Our work stretches from measuring the quality of research in universities to identifying those who misuse funds for Obamacare in the United States. We support health systems in the US and Germany to provide better care to their patients.
That global reach – and our UK headquarters – offers great insight into the use of healthcare data around the world and a unique perspective on the debates which have raged in the UK.
Already in practice
And put simply, the furore over care.data would never have been witnessed across the Atlantic, where the use of big data techniques to deliver improvements in care is well advanced.
There is, for example, little concern in the US about the “VistA system” – which includes some two billion clinical notes captured by clinicians about their patients – because of the benefits that it brings.
‘There is little concern in the US about big data techniques because of the benefits that it brings’
VistA’s “prediction engine” can answer natural language queries from clinicians about their patients’ conditions based on the patterns captured through that wealth of data. That system sounds like science fiction in the UK.
In the US, the opportunity of big data has been quantified as being $300bn (£180bn) of a $2.7tr budget (£1.6tr). In the UK – where we start from a lower base and where the opportunity is surely greater – achieving savings in that proportion would give the NHS an extra £12bn to play with just this year.
The question now – for champions of care.data specifically, and for supporters of big data in general – is to understand why care.data has stumbled. We see three reasons.
The most obvious is a failure of communication. A programme which requires mass public consent to succeed has witnessed precious little public relations.
Proactive communication has seemed to be added on only as an afterthought. Leaflets were sent to the public only after the information commissioner voiced concern.
Supporters of the programme were pressed into action to defend it only once the media environment had turned hostile – rather than employed proactively to frame the debate in a positive way.
As the debate continued to turn sour, the finger was pointed at the Royal Mail for failing to deliver leaflets. These were the very same leaflets which were dubbed unclear almost before the first one had even been posted.
However, it is too easy to blame communication alone for care.data running aground.
‘Political leaders should explain the benefits the British public will reap from the power of big data’
A more significant reason is the opacity of the rules which set out how healthcare data should be used.
The first delay in care.data was triggered after the information commissioner queried NHS England’s own interpretation of how far they needed to go to secure public consent. It is clear these rules now need to be simplified and streamlined to aid public understanding.
These rules must continue to ensure legitimate privacy concerns are addressed but permit controlled access to big data in a timely manner when there is a benefit for the public.
The third reason is the absence of a clear political commitment to harness the power of data.
Political leaders may no longer have direct responsibility for delivering the specific care.data programme, but they should still explain the benefits the British public will reap from the power of big data in general, both as patients and as taxpayers.
If those benefits are absent, the risks to data privacy loom larger. In the US Barack Obama has proved an effective champion of big data in healthcare despite not being directly responsible for its use, and that leadership must be replicated here.
Taking it all in
These are the lessons that policymakers now need to take on board.
If they do not it will be a forlorn hope to assume that in six months time care.data can simply be restarted to widespread public acclaim and with little public concern.
The challenges have proven great, but the prize – of better patient outcomes and billions of pounds of savings – remains well worth winning.
Olaf Lodbrok is managing director at Reed Elsevier Health Analytics