RCN position on General Practice Data for Planning and Research

A new system for General Practice (GP) data was due to be introduced in England on the 1st July 2021. Since the time of writing, the implementation of this system has been postponed to the 1st September 2021. We expect the issues we raise below to be addressed by the new implementation date.

The new system will share pseudo-anonymised patient data for anyone registered with a GP in England with NHS Digital to support:

• the planning and commissioning of services
• the development of health and care policy,
• public health monitoring (including the COVID-19 pandemic) and interventions
• enabling areas of research (e.g. the long-term impact of COVID-19, analysing healthcare inequalities and research and developing cures for serious illness)

While the RCN largely supports an open approach to data sharing for these purposes, we have serious concerns about the way the system is being introduced.

First, it is unclear how, if at all, the new system has been communicated to the public and whether patients or carers understand the way the opt-out process works. There are two opt-out methods and the distinctions between them can be confusing. Even the name of this new system - General Practice Data for Planning and Research (GPDPR) – can be confused with the General Data Protection Regulation (GDPR), the standard for consumer rights regarding their data.

Second, we are concerned whether people are fully aware of the implications of the 1 July date and the opportunities they have had to take action. People have until the 23^rd June 2021 to opt-out completely. They can opt-out at any time after this date, however, NHS Digital’s privacy notice states that if you opt out after the 23^rd June deadline, NHS Digital will still hold any patient data extracted previously.

We know from research in this area that patients and carers support the use of data for research and planning if specific conditions are met (e.g. de-personalising data, independent oversight, and transparency – especially if data may be available to third parties). However there has been a lack of communication on the data sharing, which could have serious consequences for the trust and confidence of the public in their relationship with GP practices and staff.

We understand that proposals for data to be held in a Trusted Research Environment are in progress. In the long term this move could: establish improved ways to manage risk and ensure public benefit; offer more opportunity for people to be engaged over the uses of their data; and provide greater transparency about third party partnerships.

Currently, the infrastructure for this is not in place, so it is not yet mandatory to put patient data into a Trusted Research Environment. We would therefore urge the government to postpone NHS Digital’s collection of GP data, until the appropriate systems are in place to manage risk.

We would also urge patients to follow the opt out guidance and complete a Type 1 opt out form, and ask our members to encourage them to do so as a matter of urgency, as the form will need to be submitted by the 23^rd June, if people wish to do so.

People have seen the benefits of public health data during the pandemic, but they must have confidence in any new system built with a similar purpose.

We believe that the key bodies such as NHS Digital must work to address this situation urgently and commit resources to clarify the situation for patients in England.