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Assurance phase report - General Practice Data for Planning and Research (GPDPR)

Read our report about the Assurance phase of our Communications and Engagement Working Group (C&EWG).

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Background

Every time patients use the NHS, there’s an opportunity to learn a bit more about the nation’s health and about the NHS services we provide. By safely and securely collecting and analysing this information across all patients, we could build up a detailed picture which will help us to research new treatments, deliver the right services and improve the NHS.  

The use of patient data for planning and research has the power to transform our understanding of what causes ill health and, importantly, what we can do to prevent or treat it and provide better care. We already use data from hospitals in this way to support research and planning.

While the benefits are well understood, using GP data for planning and research is a sensitive area. It is crucial that patients and the public understand how health data is used and that they have choices about the way their data is used, and we must be transparent about the safeguards we have put in place to keep data safe.

When the GP Data for Planning and Research (GPDPR) programme launched in spring 2021, it was met with concern from some patients, public and professionals about what security and controls on access to data would be put in place. This concern prompted a redesign of the programme to address the issues raised and to meet the conditions subsequently set out in a letter to GPs from Jo Churchill MP, the then Parliamentary Under Secretary of State for Primary Care and Health Promotion.

We have organised ourselves around 3 key areas of work:

1. Communications and engagement

This workstream is focused on making sure we have an ongoing conversation with stakeholders and the public about patient data and to ensure that we learn from feedback and use it to shape our approach at each stage. 

2. Data management, access and governance

This team is working on the Trusted Research Environment (TRE) and other aspects of the programme that focus on how data is processed, accessed and kept secure.  

3. Opt-outs

The programme must meet the commitment to reduce the burden of Type 1 opt-outs on GPs and practice staff. This workstream is engaging with the profession to identify ways to achieve this, while also providing a good customer experience for anyone who chooses to apply a Type 1 opt-out.

We are absolutely committed to improving the use of GP data for planning and research in an open, transparent, and inclusive way. The voice of the public, GPs and other stakeholders is being used to shape how we progress at every stage.

We will only move toward data collection when we are confident that we have met all the terms in the minister’s letter.

Communications and Engagement Working Group

The Communications and Engagement Working Group (C&EWG) is responsible for coordinating activity to support listening, engagement and communication with key stakeholders as well as the training, development of materials and an information campaign required for successful implementation of the programme as a whole. There are statutory requirements to fulfil that are part of the NHS’s legal obligation to keep the public informed about how their data is being used, which need to be communicated to the general public.

The communications and engagement working group has set out a five-phased approach in supporting the programme, which has been developed with the programme’s external assurance groups.

The 5 phases are:

Assurance phase

Engage with key stakeholders to define the communications and engagement approach.

Listening phase

Undertake listening activities, including new research through surveys and focus groups, to build on existing knowledge to better understand the views of multiple groups including general practice, patients, health care professionals, researchers and those who plan health services around the use of GP data for planning and research.

Furthermore, knowledge gathered from listening activities will be used as part of continuous engagement with stakeholders as findings emerge and as plans develop. 

Engagement phase

Involve and engage the public, patients, health care professionals, researchers and those who plan health services, to shape and inform the programme and how it is delivered. We will look to include a broad range of people, including those who are not usually engaged in discussions about data sharing. We will aim to co-produce campaign approaches, materials and messaging with the public and key stakeholder audiences.

Demonstration phase

Share the views and opinions we have heard throughout the first 2 phases and explain what and why decisions have been made. Throughout the Listening and Engagement phases there will be regular updates, which will be brought together into a final report at this time.

Delivery phase

Provide appropriate information, training and materials to ensure the public and general practice are well informed about the improvements gained through GP Data for Planning and Research and understand their data options.

Aims and objectives

The following objectives were agreed for the Assurance phase:

  • inform stakeholders of our planned approach to the communications workstream, listen to their feedback and amend the communications workstream plan to accommodate those changes
  • ensure our approach has stakeholder buy-in and demonstrate transparency and listening in our work

Stakeholder listening

As part of the Assurance phase we consulted with the following organisations and people. We are very thankful for their time and for the improvements we were able to make to the communications plan based on their feedback. 

Select the following organisations and people to find out how we engaged with them:

DiscoverNOW

Date

20 August 2021

Plan

N/A

Comments

Exploration of possible methods for listening and consultation phase, looking at specific ‘deliberation’ methodology.

Action

The information was shared with research and insight colleagues as part of the early analysis to approaches.

British Medical Association (BMA) / Royal College of General Practitioners (RCGP) (informal)

Date

24 August 2021

Plan

Comms and Engagement Strategic Plan

Comments

No specific comments but a reminder to be conscious of requests on GPs.

Action

N/A

Patient and Public Engagement and Communications Advisory Panel

Date

9 September 2021

Plan

Comms and Engagement Strategic Plan

Comments

Need clear understanding of wording (such as listening, consultation, engagement, campaign), to ensure all external facing communication is in plain English and regular updates.

Request for link to broader data piece.

Action

These comments informed early thinking around Drumbeat Communications approach to ensure continuous updates on programme developments to ensure transparency of decision making. 

Consultation phase has been updated to Engagement phase.

The wording of the public information campaign has been updated to sentiment change campaign (at one stage it was behaviour change campaign, but it was then discussed this was not representative of the approach).

Alignment with other data programmes and activities as appropriate.

Information Commissioner’s Office (ICO)

Date

14 September 2021

Plan

Comms and Engagement Strategic Plan

Comments

No challenges to comms approach at this stage. Will be part of Information Governance Expert Liaison Group (IGELG) in future.

Action

N/A

use MY data

Date

15 September 2021

Plan

Comms and Engagement Strategic Plan

Comments

Gave verbal update (not full plan), agreed approach seemed appropriate and requested to see detail. use MY data sought details of the oversight groups for the GPDPR and specifically, the inclusion of patients and the public.

Action

Shared detail at later date when Use My Data joined the Patient and Public Engagement and Communications Advisory Panel (PPECAP).

Prof. Helen Stokes-Lampard/Association of Medical Research Charities (AMRC)

Date

16 September 2021

Plan

Comms and Engagement Strategic Plan

Comments

Communications plan looks good but needs to appear to be less linear.

Action

Visual redrawn to demonstrate overlap of phases with Listening phase running continuously.

Joint GP IT Committee (BMA/RCGP)

Date

21 September 2021

Plan

Comms and Engagement Strategic Plan

Comments

No challenges to comms approach.

Action

N/A

Our Future Health

Date

27 September 2021

Plan

Comms and Engagement Strategic Plan

Comments

Gave verbal update on plans. Agreed to share information as and when appropriate.

Action

N/A

ICS Devon, Dorset and Kernow/ ICS Birmingham and Solihull (informal)

Date

28 and 29 September 2021

Plan

Comms and Engagement Strategic Plan

Comments

Specific questions asked about feasibility of undertaking focus groups/ surveys with General Practice – provided helpful advice and guidance.  

Action

This was fed back into development of research approach.

Research Advisory Group

Date

4 October 2021

Plan

Research Plan

Comments

Questions raised if focus on General Practice was appropriate. 

Highlighted a requirement to set the parameters of the research exercise – for example, what can and can’t be influenced as a result. 

Action

Understanding of views in General Practice, both from which to baseline activity, but also to help shape work, is felt to be the weakest by the programme team. It is also recognised that GPs are trusted members of their community and that their support is crucial in gaining patient trust. The focus therefore remains. The research plan focuses on GPs and practice staff, others working in health and care and on patients, to fill some specific gaps in knowledge and understanding. 

It is agreed that during the Listening Phase those who take part in research should understand clearly what their responses can and can’t influence. 

ICS Engagement

Date

5 October 2021

Plan

Research Plan

Comments

Discussion of approach – broad agreement.

Action

N/A

Practice Manager Network

Date

7 October 2021

Plan

Research Plan

Comments

Specific discussion around how to engage with practice managers.

Action

This was fed back into development of implementation plans.

Patient and Public Engagement and Communications Advisory Panel

Date

7 October 2021

Plan

Research Plan

Comments

Suggestion that research needs to understand misperceptions around data.

Action

Misperceptions and best ways to communicate about the programme are topics to be covered by the research activities and later by testing any creative executions and messaging.

The research activities will align with broader questions on data confidence as appropriate, including in the Omnibus survey.

Involve

Date

11 October 2021

Plan

Research Plan

Comments

Conversation held around specific approaches for consultation/engagement phase.

Action

For information at this stage – to help inform Engagement phase approach. 

Understanding Patient Data

Date

18 October 2021

Plan

Research Plan

Comments

Offered to share some of their findings to support development of the research implementation plan, which was welcomed by the team.

Action

N/A. 

Check and Challenge Group

Date

27 October 2021

Plan

Research Plan

Comments

Request to see focus group/research stimulus in advance.  

Suggestion to include citizens’ juries in listening phase.  

Clarification that research findings will be published. 

Action

Stimulus to be shared with group once prepared. 

Research and insight team investigated whether citizen juries would be suitable/feasible for listening phase, but conclusion was that these would be best for Engagement phase.

Research findings will be published.  

Information Governance Expert Liaison Group

Date

2 November 2021

Plan

Research Plan

Comments

N/A

Action

N/A

To facilitate these and future assurance activities, measures have been put in place to standardise meetings. This includes aligning the external groups dedicated to GP Data for Planning and Research and ensuring the programme has a regular agenda item on other broader NHS Digital groups.

In addition, ad-hoc meetings have been undertaken with specific individuals, such as the Implementation Business Change community in NHS Digital and the Practice Manager network, as appropriate. 

The ongoing regular meetings are:

Group Purpose Meeting frequency
GPDPR Check and Challenge Advisory Group Dedicated group for GPDPR to provide advice and guidance from the perspective of GP profession and data usage communities Every 2 weeks
GPDPR Patient and Public Engagement and Communication Dedicated group for GPDPR to provide advice and guidance from the perspective of patients and public Every 2 weeks
GPDPR Programme Board Cross-department board of NHSD, NHSX, NHSE&I, DHSC for approval of activity Monthly
GPDPR Information Governance Expert Liaison Group (IGELG) Broader group to provide advice and guidance from perspective of IG community with regular agenda item for GPDPR  Monthly
Research Advisory Group (RAG) Broader group to provide advice and guidance from perspective of research community with regular agenda item for GPDPR  Agenda item every 2 months
Joint General Practice IT Committee (JGPITC) Regular meeting with RCGP and BMA with regular agenda item for GPDPR Monthly
Strategic General Practice Meeting Regular informal meeting with BMA and RCGP with GPDPR focus Weekly

Conclusion

The Assurance Phase has enabled refinement of the communications and engagement approach with input from a broad range of stakeholders.

We have now initiated the Listening Phase and will publish a similar report at the end of that work demonstrating what we have learned and how that has shaped the programme. 

Last edited: 4 August 2022 1:19 pm