We need to win the PR battle on sharing patient data

Despite NHS “winter pressures” dominating the headlines, the causes of those pressures remain ill defined.

There is a simple reason for this: although we know that people have been attending and are being admitted to hospital in ever greater numbers, we do not know why.

Our knowledge of the people using our NHS all too often stops at the hospital door, and that impedes our ability to address the pressures on it.

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Human factor

There is a very real human issue at the heart of this. Although the language of the NHS is often that of the “system” and the pressures on it, each unnecessary attendance or admission represents an individual instance of poor care.

As the Liberal Democrat spokesman for older people, and because it is older people who most frequently suffer at the fault lines of hospital and other health and care services, I am determined to overcome these challenges.

Understanding more about why people are attending and are being admitted to hospital requires a simple step to be taken: to link the information the NHS holds on patients in GP practices with the information it holds on patients going through hospital.

“The forward view pledges to bring together hospital, GP and administrative data”

At a stroke, this would give us much richer information about the people who make use of our NHS at any point in time.

It would allow us to see what is driving the increases in demand and, where intervention would help, to take action to address them.

It is also a step which – following the arguments over Care.data last year – seems further from our grasp than ever.

The NHS leadership, admirably, continues to make the case for reform.

The NHS Five Year Forward View pledges to bring together hospital, GP and administrative data to better understand the patient pathway and to support quality improvement.

I would add to this the aspiration of incorporating social care data.

Number’s up

My colleagues in Parliament are also leading the way. Jeremy Lefroy’s private members’ bill is set to pass into law a requirement that all health and social care organisations make use of the “NHS number”.

This will make it far easier to bring together different sets of data in the future. 

However, there can be no progress without winning public support – which is clearly lacking – and by convincing people of the benefits of their data being shared.

It is not good enough to simply dismiss the concerns of the public, particularly over an issue as sensitive as our healthcare information.

‘There are many examples of the carelessness with which some public bodies have handled data’

There are many examples of the carelessness with which some public bodies have handled data.

And there are legitimate concerns over the motives of those who wish to examine the data. Many of us draw the line at our healthcare information being used to help companies make profits. 

If we wish to make progress on this issue, we must do far more to take the public with us.

And there are important lessons to be learned from the Care.data episode. The first is that the sharing of data needs more support from healthcare professionals.

At a discussion I chaired on Care.data last year, the striking consensus reached was that the project stalled in part because GPs were unwilling to lend their weight to it.

The work NHS England is now doing to pilot Care.data, in partnership with GPs, is rectifying that oversight.

Communication mission

The second lesson is that the purpose and rationale for making better use healthcare information needs to be clearly communicated to the public over a sustained period of time.

There needs to be a much broader movement in the coming months and years to both enable individuals’ data to be shared – but also to empower those individuals to make use of the information professionals collect on their behalf.

Social enterprises such as Patients Know Best have sought to give patients much greater control over their healthcare information.

‘There can be no progress without winning public support’

These initiatives should be encouraged. There is likely to be much greater appetite among the public for their healthcare information to be shared if they understand what will be available and how it can help others.  

The third lesson is that there is a need to clarify and streamline existing legal powers to share individuals’ healthcare information.

These legal powers seem to stretch far beyond what the public understands to be the case.

One of the challenges Care.data encountered was the difference of opinion between those leading the programme – who in good faith believed that current laws permit the sharing of healthcare information without individuals’ consent – and ministers who were unwilling to see their legal powers exercised to this degree.

With some joined up thinking on data, and some joined up data, we can start to tackle some of the pressure points in the NHS.

Paul Burstow is the Liberal Democrat spokesperson for older people and a former care minister