Challenging the NHS data opt-out: letter to the editor

A comment from the editor-in-chief can be found at the end of this letter.

I am writing in response to your article on the sharing of GP data.

I am really saddened by the one-sided argument currently circulating in much of the press regarding the proposed use of our GP data. I am an NHS employee and the use of data is a large part of my role. However, the views in this response are purely my own opinion and, as such, not representative of the NHS more widely. The issue under debate is that NHS Digital (the national custodian for health and care data in England) plans to replace the current system of collecting data from GP surgeries with a new system, the General Practice Data for Planning and Research (GPDPR). The critically important part of this is ‘for Planning and Research’.

The line being taken by many current articles in the press suggests that GPs are being told to hand over identifiable sensitive patient data, potentially to be exploited for corporate profit, with emotive headlines such as ‘Government wants to sell your data’ and suggestions that people should ‘opt-out’ to mitigate this. To ignore the positive benefits of the project (future research into medical interventions and service planning – including planning for future pandemics) is extremely irresponsible. What if we all opt out? There would be no GP data available to improve health services or to respond to future health crises, let alone to show the passage of a future pandemic.

The NHS Digital website clearly states that data is held securely and is only ever used for health research and planning purposes. Such data is currently being used by the University of Oxford Recovery Trial, a trial that has found ways to improve the treatment for people with coronavirus. The site also states that “NHS Digital will not collect patients’ names or addresses” and that: “Any other data that could directly identify patients (such as NHS Number, date of birth, full postcode) is replaced with unique codes which are produced by de-identification software before the data is shared with NHS Digital.” Whilst it is possible to re-identity the information, this is only permissible in particular circumstances, eg where there is a legal obligation, or a patient consents to take part in a research study and gives specific consent for their data to be identified.

Any data that NHS Digital collects will only be used for health and care purposes. It is nevershared with marketing or insurance companies. Only organisations using data for healthcare planning and research purposes will have access to the data, and they will only receive data that is specific to their requirements. This will also be subjected to scrutiny and audits. When information is shared with other organisations, these organisations have to go through the Data Access Request Service to make sure they will store it safely and legally, and that they have a good reason for using it, that reason only being for the benefit of health and care.

A recent press release from National Health Executive welcomed delaying the changes until 1 September not purely to allow time for more people to opt out, but to allow more time for them to better understand how the data will be used, to allow the public to be better informed about the project.

I definitely won’t be opting out as I believe the benefits to all, such as research, health service planning and development, outweigh any risk of personally identifiable data being used for unscrupulous purposes. The pledges from NHS digital assure me that this risk is not an option and I implore others to take these arguments into account before going straight to the ‘opt-out’ option.

For each person who opts out, the NHS data is rendered that bit less robust, data that is used to improve the future for all of us.

Comment from the Editor-in-Chief:

We have published this rebuttal argument on the NHS data grab story because it illustrates how distrust in this government has wider and more alarming ramifications for us all. By creating an environment of distrust, this government betrays people like Barbara who use data securely, with integrity and for the greater good. It undermines the correct use of data to improve the quality of our lives.

The bigger story in all this is that breakdown of trust. Many of us simply do not believe this government, Johnson or Matt Hancock when they say that the NHS is not for sale or that our data will not be ‘monetised’. We do not believe this government has no intention to privatise the NHS, especially when we see that Dido Harding is a leading contender to head up the NHS.

It is our view that our cynicism is justified – a very sad reflection on the state of politics right now and absolutely no reflection on the integrity and professionalism of data users/researchers like Barbara.