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Data and Diagnosis: Has Covid created confidence to share our health data?

At the end of last summer, shortly after the first Covid wave hit the UK, I wrote a blog reflecting on ways in which the pandemic had changed our view of virtual healthcare. This was seemingly a trend which, like many others last year, had accelerated on the back of Covid. At the time I questioned to what extent the public was ready to engage with the majority of their healthcare virtually.

My piece was informed by some research Grayling carried out into when and how people were accessing treatment, what they were happy to do remotely and when they preferred to speak to someone face to face. I also touched on the opportunities technology presents, and the barriers to specific demographic groups, and reflected on the multiple, and frequently controversial, attempts over more than a decade to bring in a simple national system for sharing health data.

I was reminded of the topic again recently when NHSX, the Government body charged with driving the digital transformation of care, published its draft strategy: ‘Data saves lives: reshaping health and social care with data.’ I wondered whether attitudes to health have shifted over the past 18 months and if there has never been a better time to introduce what NHSX describes as ‘supporting the NHS in creating a modernised system fit for the 21st century which puts patients and staff in pole position’.

Under the proposals, patients will be able to access test results, repeat prescriptions and care plans from across all parts of the health system through patient apps, such as the NHS App. It’s claimed that improving data collection and the way NHS systems work together will mean staff spend less time looking for information they need and more time on patient care. The then UK Health and Social Care Secretary Matt Hancock went further, declaring that ‘data saves lives’.

And there’s little doubt that after the year we have had the public is likely to be far more receptive to this message. From making our vaccination bookings to taking part in research programmes like the Zoe Covid Symptom Study, we have all been happy to share data not just for our own individual benefit, but for the wider good.

However, services such as those provided by the NHS App only work if, as David Aaronovitch recently noted in The Times, there is trust between the patient and the collector of the data.  He points out that this was achieved during the pandemic by adopting a ‘trusted research environments’ model’. This essentially means that data stays where it is, rather like a library reading room, rather than being available for loan.

On this basis, we now have a unique opportunity ahead of us. The public have clearly demonstrated that when they are confident their data is being used responsibly and safely, and where they see a benefit to themselves and others, they are happy to share their data.  The Government needs to build on this increased public engagement to put in place a national system that patients and clinicians alike support and which will benefit us at every stage of life and health. It’s been a tough nut to crack, and taken many years of trying, but with a fair wind, this Government might just do it. Now to tackle social care…

 

By Kathryn Ager, Head of Health, Grayling