Last reviewed 8 June 2021
The Department of Health and Social Care (DHSC) has confirmed that it expects GPs to move patient data to a central NHS Digital database from 1 July.
Under the new system, called General Practice Data for Planning and Research (GPDPR), data from surgeries in England will be added to an NHS Digital database in "near real-time". Data from records created up to 10 years ago will be extracted, and for every NHS patient in England, the entire record will be downloaded.
The DHSC’s plan is to put the medical histories of more than 55 million patients into the new central database where they will be made available to the private sector and other researchers. NHS Digital said the GPDPR system will reduce the burden on GP practices and create a valuable data source for pharmaceutical and public policy research.
The data, which will include information on patients’ physical, mental and sexual health, will be pseudonymised. However, critics have warned that pseudonymisation can be easily reversed, and six weeks between the announcement of the plan and the beginning of collection has not given patients enough time to understand what is happening to their medical records.
Patients have until 23 June to opt out. They must find and sign a “Type 1” opt-out form, here, print it out and give it to their GP. It is the GP’s responsibility to communicate the plan to patients and update their website privacy statements. GPs have also been encouraged by NHS Digital to include information on social media, newsletters and other communications. They must also handle questions and process the patients’ opt-out forms.
The British Medical Association (BMA) and Royal College of General Practitioners (RCGP) have issued a joint letter, here, to express "concerns about the lack of communication with the public". It calls for NHS Digital to "take immediate action to run a public information campaign". The BMA has also called for a delay to the patient data-sharing programme.
According to The Guardian newspaper, here, some GPs in East London have already refused to release patient data, citing the lack of an effective information campaign. Dr Ameen Kamlana, one of the Tower Hamlets GPs taking part in the action, said doctors fear that the automatic transfer of medical records will undermine the trust patients have in them.
Medical privacy campaign group MedConfidential also criticised the decision to proceed as potentially "destroying public trust and harming research in the process".
And campaigning law group Foxglove is supporting a coalition of organisations to challenge the scheme in court. The group has already sent a pre-action letter to the DHSC and NHS Digital. They argued that the "rushed process" of launching the programme gives patients no meaningful chance to opt out and excludes older people and others who may not be online.
The NHS said the data will only be used for planning and research, and that each application to use the data will need approval from advisory groups. It said the data may not be used "solely" for commercial purposes or for insurance, marketing, promoting or selling products or services, or market research, but some private sector organisations will be able to see it with permission, and critics are worried about the type of organisations that may gain access.
NHS Digital responded to concerns about privacy when they told The Guardian, here: “We have engaged with doctors, patients, data, privacy and ethics experts to design and build a better system for collecting this data. The data will only be used for health and care planning and research purposes, by organisations which can show they have an appropriate legal basis and a legitimate need to use it.”