GPs in England have been told they will not have to begin collecting patient data for research and planning until the NHS has passed three tests.
Minister for Private Care and Health Promotion Jo Churchill has set out the process, which marks a change from the plan for them to begin collecting data from 1 September.
This is the second change of plan for the use of the General Practice Data for Planning and Research (GPDPR) service – designed to facilitate the extraction of GP patient data through NHS Digital – which was originally scheduled for launch on 1 July.
In a letter to all GPs, Churchill says data collection should only begin when three criteria have been met:
- Patients are given the ability to opt out or back in to sharing their GP data with NHS Digital, with data being deleted even if it has been uploaded.
- A trusted research environment is available in which approved researchers can work securely on de-identified patient data which does not leave the environment.
- A campaign of engagement and communication has increased public awareness of the programme, explaining how data is used and patient choices.
NHS Digital said the letter also makes clear that patient data will never be for sale and will only be used by organisations that have a legal basis and legitimate need to do so.
In addition, for any patient choosing to opt out any data of theirs that had previously been collected will be deleted.
This follows concerns that the timescale was not sufficient for the necessary privacy protections to be put in place. There have been protests that the data could be used for purposes of which many patients would not approve, notably in making it available to commercial operators.
NHS Digital interim CEO Simon Bolton said: “Patient data is vital to healthcare planning and research. It is being used to develop treatments for cancer, diabetes, long Covid and heart disease, and to plan how NHS services recover from Covid-19.
“This research and planning is only as good as the data it is based upon. We know we need to take people with us on this mission and this decision demonstrates our absolute commitment to do just that.
“We will continue to work with patients, clinicians, researchers and charities to further improve the programme with patient choice, privacy, security and transparency at its heart.”
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