Why are there calls for patient data-sharing scheme to be halted?
Labour has written to the head of NHS Digital asking for a pause in the planned rollout of a new data-sharing scheme for GP surgeries. Here are some of the key questions and concerns about the proposals. Officially known as General Practice Data for Planning and Research, it comes into force in England from 1 July. 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. 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, but must do so by 23 June. 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. 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. 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. 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, 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. Labour has now also called for a delay to allow for a wider consultation.