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).
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:
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