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 designed, developed and operated 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.

 *In 2023 NHS Digital was merged with NHS England.

use MY data's position on the GPDPR

As a patient-led movement focussed on the use of patient data for research, 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 focusses 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 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, - patient voices on the use of their patient data. 

How we continue to engage with NHS England

A key focus for use MY data and about which we wrote to the CEO of NHS Digital, was concerns about the lack of transparency about the launch and the programme and this lack of transparency undermined public confidence in the use of patient data for research.  We worked to bring patient voices 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 the GP Data Patient and Public Engagement and Communications Advisory Panel (PPECAP), one of three new GPDPR Assurance Groups (the other two are the Check & Challenge Advisory Group and the Information Governance Expert Liaison Group).  This followed lobbying for the details of GPDR oversight groups to be made public.

The panel membership is made up of patients and professional representatives from organisations with an interest in patient data.  It is 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 England 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.

Our place on the GPDPR Patient & Public Engagement and Communications Panel is taken by three Executive Group Members rotating their attendance to represent use MY data. Updates about the Panel’s work is communicated to Members via our Membership newsletter.

Through this work, we are endeavouring to support the responsible launch of GPDPR while trying to ensure transparency for patients about this planned use of their data.

02 March Panel away day notes

On 02 March a PPECAP awayday meeting was held, at which the future direction of the collection of primary care data was discussed. This was a lengthy meeting, at which lots of ideas and options were discussed.  Two use MY data representatives attended.  NHS England has delayed the publication of the notes from this meeting and different reasons have been given for missing the publication deadline, including NHS England being under purdah (communications restrictions ahead of the local elections). 

We prepared our own report as a summary of the meeting, specifically to share with Members, but NHSE requested that we should not publish this, but await their publication of the minutes of the meeting.  We asked for a clear deadline for publication of the notes and (on 20 April) were given the date of 10 May as the date for publication, post-purdah.  The notes were not published on this date and no alternative date was given.

At the PPECAP meeting on 11 May, NHS England advised that there is now no set date for publication of the notes, as NHS England has decided to seek Ministerial clearance before publication.  PPECAP members will be notified when Ministry clearance is sought. 

use MY data updated the Membership about this situation and lack of transparency.  Of particular concern is that Panel Members have not been informed whether their advice has been adopted as policy or whether NHS England has chosen to adopt an alternative approach to delivery of the GPDPR service.

Our Membership was updated in a newsletter to Members on 17 May, highlighting the worrying lack of transparency, concerns for use MY data’s reputation and seeking Members views on whether use MY data should continue to remain on the panel:

“The Executive Group would very much appreciate the thoughts and views of use MY data Members, ahead of meeting.  Our use MY data values say that we will work with organisations that are open and transparent about our data.  On this particular issue, NHSE is not being transparent”.

The Secretariat of use MY data met with Lorna Branton, Head of communications and engagement for GP data, NHS England, to discuss use MY data’s position. The Secretariat invited Lorna to provide a direct update to you and we are very pleased to bring you this, with thanks to Lorna for providing it.

GPDPR update - Lorna Branton, Head of communications and engagement for GP data, NHS England (25 May 2023)

“Following the piece in last week’s newsletter, I wanted to take the opportunity to talk to you all about GPDPR and the report which was mentioned in the article.

I want to start by thanking use MY data for their ongoing support and active engagement in the Patient and Public Engagement and Communications Advisory Panel (I apologise for the not so snappy name, which we abbreviate to PPECAP). The group is incredibly important to us and is providing a blueprint for how to take on board public views on an ongoing basis for data projects.

We very much use the PPECAP group as an extension of our team. Sometimes that means we talk about early ideas and thoughts, where we need to gauge whether we are thinking along the right lines, and that is reflected in our Terms of Reference. These thoughts don’t always turn into action or policy because we are having such an early conversation. This is really important to us, so that we have patient voices at the heart of our thinking throughout the entire process. The away day referenced in last week’s newsletter was this sort of conversation and it was incredibly valuable to us.

I hold my hands up that I made a mistake in thinking that we would be in a position to publish our report far earlier than we are able to, which is why we haven’t hit our deadlines. For that I apologise, but I do want to explain where we are and to reaffirm our commitment to publishing when we are able.

Our commitment to publishing the report and the views of the panel remains, but we will do so when we have a clear direction of travel agreed that we can communicate at the same time. This is taking longer than anticipated, partly due to the merger and partly due to other urgent project commitments for the team. This will allow the report to be published when it will make sense as a key part of our plans, rather than being confusing as a stand-alone item. The report is a key part of our ongoing listening and engagement journey.

We have also previously offered uMd the opportunity to develop a blog to accompany the report, and we also said in our last meeting that we would reflect concerns about publication in our minutes, which is entirely appropriate and which we have done.

As a team we remain committed to working in the open and to publishing action notes from our meetings, our research findings, and blogs and articles that hopefully help people to make sense of all the information out there – all of this is available on our website. At the same time, we need to be able to gain views early and confidentially to help our thinking, because we don’t want to do any thinking without involving patients and the public. Once those thoughts become firmer we will always share them publicly. On this occasion, we mistimed when we would be ready to do this and again, I apologise for any concern this has caused.

I am incredibly proud of the way the GPDPR team has worked with all of our engagement groups over the past 18 months. We continue to learn a lot from each other, we have open and challenging conversations and we are all aiming to be able to unlock the power of GP data in a responsible way which safeguards privacy, has public trust and understanding and allows society to benefit from the new insights, treatments and developments that this data could enable. Thank you for your ongoing interest and involvement.”

Updated 01 August, 2023