Have you been diagnosed with a brain tumour? Order your free information pack.

Data access vital for NHS digital revolution

The Health Secretary, Matt Hancock, has spoken today of his frustration at slow progress towards embracing digital technology in the NHS.

In a speech at think-tank The King’s Fund, he described how it took him seven months to persuade people across the system that emails, not letters, should be the ‘default mode of communication’ between patients and the NHS.

We welcome Mr Hancock’s honesty, just as we welcome his creation of NHSX –  the unit set up in February to drive digital transformation in the NHS and allow patients and staff to benefit from the latest digital systems and technology.

We don’t doubt Mr Hancock’s commitment to technology as key to improving patients’ experiences and outcomes. 

But we also know that more could be done digitally right now to remove at least one barrier we face in our quest to double brain tumour survival and halve the harm caused by the disease.

We’re building a pioneering databank, BRIAN (Brain TumouR Information and Analysis Network) to allow people affected by a brain tumour and researchers to pool their data safely and securely.

Hundreds in our community have told us they want to allow us access to their NHS records to help us build BRIAN.

We’ve done everything we can to demonstrate that BRIAN will adhere to the highest possible data security standards.

Yet we have been told continuously by the NHS that we cannot have this access without paying a significant fee and following enormously complex procedures.

We understand, of course, that there must be strict rules around data-sharing and storage.

But when procedures and payments become barriers to action that will make a real difference to people affected by a brain tumour – people who want us to have access to their data – we think it’s time to redress the balance.

In his speech today, Mr Hancock spoke of opening the digital ‘ecosystem’, partly so that ‘charities will be able to build apps for patients with specific conditions’.

We very much hope this is a signal that the NHS will ensure we can gain access to the data we need to develop BRIAN fully as a potentially life-changing tool for everyone affected by a brain tumour.

Find out more about BRIAN