Why has the NHS patient data-sharing scheme been pushed back?

Plans to allow an NHS system to extract patient data from doctors’ surgeries in England have now been pushed back by two months amid worries over privacy. Here are some of the key questions and concerns about the proposals.

Peter Walker www.theguardian.com

What is the plan?

Officially known as General Practice Data for Planning and Research, it had been due to come into force in England from 1 July, but has now been delayed to 1 September. The plan is to compile information about physical, mental and sexual health from GP surgeries into a central database, including diagnoses, symptoms, test results, medications, allergies, immunisations and referrals, as well as data on sex, ethnicity and sexual orientation, and on who has treated patients. It will exclude any identifying details such as names, addresses, images or details of conversations. Postcodes will be included, but in a coded form.

What data will be collected?

It will include everything for the last 10 years, and will be updated constantly as more data is added to GP records. Some elements of data are not allowed to be shared under law, for example about IVF treatment, and some information about gender re-assignment. Individual patients can also opt out from the scheme. They had been given until 23 June to exercise this right, but a now likely to have longer, though a new deadline has not yet been announced.

Why is it being collected?

According to NHS Digital, the data will be used for a “wide variety of research and analysis to help run and improve health and care services”. Among areas it highlights include the long-term impacts of Covid, health inequalities and research for serious illnesses. However, it will also be available to private sector organisations with the necessary provisions, although the data cannot be used purely for commercial purposes.

How is this different to what existed before?

It replaces a data system called General Practice Extraction Service, which also allows for the study of pseudonymised data (and in certain cases, data with identifying elements). However, rather than being one ever-updated central store of data, it is a more bespoke system, with individual GP practices voluntarily agreeing to take part and sending information when requests are made.

What are the objections?

There are two main worries. One is the sheer amount of data being held centrally, and the concern for breaches, or for the leak of any identifiable information. The other is what is seen as a lack of public information about the scheme, and the limited time for people to opt out. Similar concerns led to the scrapping of an earlier data-sharing scheme in England in 2016 called Care.data.

Who is concerned?

Primarily doctors’ groups. The Royal College of General Practitioners has written to NHS Digital to say that, while it backs the idea of data sharing, it was “critical that this is transparent and that patients have confidence and trust in how the NHS and other bodies might use their information”. On Friday last week, the British Medical Association called for the scheme to be delayed “until patients and the public have had time to be aware of and understand the programme and choose to opt-out if they wish”. On Sunday, Labour also called for a delay to allow for a wider consultation.