GP Data for Planning and Research (GPDPR)

Our work to bring patient voices to the implementation plans for GPDPR

The background to the GPDPR 

In May 2021 NHS Digital, the national organisation which designs, develops and operates the national IT and data services for the NHS in England, announced the introduction of a new service, “which will more efficiently collect primary care data and make it available for better planning of healthcare services and for use in medical research.”

This new service, called General Practice Data for Planning & Research (GPDPR) was to collect data from all GP Practices in England into NHS Digital from July 2021.  It was to extend the use of data beyond the pandemic response, where data was used for purposes such as identifying people who should have priority for vaccinations because of underlying health conditions.

Following feedback on its initial schedule, NHS Digital paused the collection of GP data for Planning and Research in England, and highlighted a series of actions which needed to take place before any implementation.  This included a 5-phase communication plan, with phases identified as Assurance, Listening, Engagement, Demonstration and Delivery.

use MY data's position on the GPDPR

As a patient-led movement, use MY data supports what GPDPR is trying to achieve. We want to see our data used to improve patient care and outcomes. However, there needs to be much greater communication to patients and the public so that they understand more about benefits, risks and controls, so that they can make an informed choice and opt-out if they wish.  We must ensure that anybody wanting to use our data should focus on explaining these anticipated benefits in ways that are understandable and accessible for the public and for patients.

The NHS relies on effective planning and innovative research to develop and deliver its services, and to improve treatments and health results. We urge our NHS to highlight more often how and why this depends on our data, in particular using real-world examples showing how using our health data delivers benefits for all of us.

To make clear our position on the GPDPR, we drafted a Press Release and a Position Statement, adding these to our website. 

How we continue to engage with NHS Digital 

A key initial focus for us, about which we wrote to the CEO of NHS Digital was our continued and growing concerns about the lack of transparency, noting that the public were unaware of the existence of the panel and about which nothing was published.  The lack of transparency about the launch and the programme undermined public confidence in the use of patient data for research.  We worked to bring a patient voice to the situation, including hosting a public webinar and engaging directly with a wide range of stakeholders.

Following the pausing of the programme, we were invited to join one of three new GPDPR Assurance Groups (the other two are the Check & Challenge Advisory Group and the Information Governance Expert Liaison Group).

The panel membership is made up of patients and professional representatives from organisations with an interest in patient data.  It is clearly defined as an advisory group, so has no executive or decision-making remit.  The group reports upwards to the GPDPR Programme Board, a group of senior leaders from NHS Digital, NHS England and Improvement, and the Department of Health and Social Care who monitor the progress of, give direction to and take decisions in relation to the GPDPR programme.

We have a formal place on the GPDPR Patient & Public Engagement and Communications Panel.  At present four Advisory Group Members are in a panel pool, covering our representation (we are allowed to send one representative per panel meeting).

For reference: NHS Digital website link:

https://digital.nhs.uk/data-and-information/data-collections-and-data-sets/data-collections/general-practice-data-for-planning-and-research/about-the-gpdpr-programme