NHS Digital has announced new plans for the GP Data for Planning and Research programme, a primary care data collection service which will make near-real-time information available to clinicians and researchers.
Originally challenged for a planned launch on 1 July 2021, the programme was later pushed back and set to begin data collection from GPs on 1 September, to allow patients more time to opt out following a strong reaction from the public and health professionals.
However, according to NHS Digital, patient data will now no longer be collected from the latter date unless three tests, as set out by Jo Churchill, Minister for Primary Care and Health Promotion, have been met.
After listening to feedback, NHS Digital says it is “determined to continue working with the sector on key elements to inform further safeguards, reduce the bureaucratic burden on GPs and step-up communications for GPs and the public” before confirming a new, official implementation date.
In a letter to GPs, the Minister for Primary Care and Health Promotion set out the changes that are intended to increase security and privacy and enable more choice for patients. The three tests to pass before patient data collection can commence are as follows:
- The ability for patients 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 where approved researchers can work securely on de-identified patient data which does not leave the environment, offering further protections and privacy while enabling collaboration amongst trusted researchers.
- When a campaign of engagement and communication has increased public awareness of the programme, explaining how data is used and patient choices.
In its own announcement, NHS Digital states that “data will only ever be used to deliver clear benefits to health and care, by organisations that have a legal basis and legitimate need to use the data” and that “the public and GPs can be assured data collection will only begin once NHS Digital’s Trusted Research Environment (TRE) has been fully developed.”
In regards to the TRE, the project will be in line with best practice and have to satisfy official bodies including the British Medical Association, Royal College of General Practitioners and the National Data Guardian, so that there is a “high degree of confidence” about the level of safety and privacy.
NHS Digital says its aim is to empower patients and build trust by allowing the flexibility to opt in and out at will and, crucially, “deleting all data collected under the programme” if patients do opt out at a later date. Work continues, it’s added to “explore a way of centralising the GP data Type 1 opt-out process” which would remove the burden on GPs.
Simon Bolton, NHS Digital Interim CEO, said of the changes: “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.”
In other NHS data-related news, as the push continues to link up information and join-up care in health settings, NHS Digital also announced last month, alongside the Private Healthcare Information Network (PHIN), the names of the first healthcare providers that will take part in pilots of the Acute Data Alignment Programme (ADAPt).
The new national data alignment programme between the NHS and private sector will integrate private hospital data into NHS systems for the first time and create a “comprehensive national dataset” of ‘whole practice’ information in England.