Government to activate centralised NHS Digital database of patient records next month in spite of criticism over lack of public information campaign
The government has decided to proceed with creating a centralised NHS Digital database of GP records next month, over protests from senior doctors and privacy campaigners.
The NHS also reportedly suggested a delay until September to give patients more time to understand the plan, called General Practice Data for Planning and Research (GPDPR), which is intended to provide data for public policy and other research.
But the Department of Health has said it expects the system to launch on 1 July as previously announced.
It said it was putting support in place and that the project would “provide benefits to patients across England”.
“The new programme for collecting data has been developed in collaboration with doctors, patients and data, privacy and ethics experts to build on and improve systems for data collection,” the department said in a statement.
Some GPs in East London have reportedly said they will refuse to hand over patient records, citing the lack of an effective information campaign for patients.
And the NHS itself suggested a delay, the BBC reported.
The project was announced in mid-May, six weeks before its launch date.
Patients can opt out by delivering a form found on the NHS Digital website to their GPs by 23 June.
The system is to deliver data from surgeries in England to a centralised NHS Digital database in near-real time, as well as bringing in data from records from up to 10 years ago.
Doctors and researchers have agreed the data would be of great value for research purposes, but some said they were concerned about the lack of public awareness.
The British Medical Association and Royal College of General Practitioners issued a joint statement expressing their “concerns about the lack of communication with the public” and asking NHS Digital to “take immediate action to run a public information campaign”.
Medical privacy campaign group MedConfidential said the decision to proceed risks “destroying public trust and harming research in the process”.
Campaigning law group Foxglove has sent a letter to the Department of Health and NHS Digital warning that unless the government pauses the database plan and seeks “meaningful patient consent”, a coalition of organisations will seek an injunction against the plans.
The database scheme follows a 2016 plan called Care.data that was abandoned amidst questions over efforts to inform the public about it.
NHS Digital says it will collect information including “physical, mental and sexual health” and details of gender, ethnicity and sexual orientation.
The information is to be pseudonymised, but privacy campaigners say this can easily be reversed.
The data may not be used “solely” for commercial purposes, but private-sector groups will be able to access it with permission.
“Patient data is already used every day to plan and improve healthcare services, for research that results in better treatments, and to save lives,” NHS Digital said in a statement.
“We have engaged with doctors, patients, data, privacy and ethics experts to design and build a better system for collecting this data.
“We have worked with our partners in the GP profession throughout as we developed this improved data collection and will continue to do so.”