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

This report summarises the activity undertaken as part of our Listening Phase. Although we have reached the end of this phase we will continue to listen to views from across our many and varied stakeholders.


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 three 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 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.

This report summarises the activity undertaken as part of our Listening Phase. Although we have reached the end of this phase we will continue to listen to views from across our many and varied stakeholders.

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 five phases are

  • Assurance phase: engage with key stakeholders to define the communications and engagement approach.  Read our Assurance phase report.
  • 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 include a broad range of people, including those who are not usually engaged in discussions about data sharing. We will 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 two 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 listening phase took place from December 2021 to March 2022 and focused on hearing from programme stakeholders to better understand how we can engage with them and others in a meaningful way about GPDPR. We have learnt that there is confusion about opting out, a lack of understanding about how data flows across the NHS and that whilst the NHS is a trusted organisation for collecting and using patient data, that trust declines significantly for third parties accessing the data.  

The following objectives were agreed for the listening phase

  • Listen to stakeholders and gather views on how best to communicate with the profession, patients and the public.
  • Give stakeholders the opportunity to inform the development of the programme approach in areas such as:
    • opt-outs
    • keeping data safe
    • building understanding of stakeholders and the public
  • Establish baseline levels of public and general practice awareness and sentiment, against which we can measure the impact of our communications and workstream activity. 

Stakeholder listening

A strengthened approach that focused on listening to stakeholders was front and centre of the programme reset in 2021. It was important to take stakeholders with us on our journey through the listening phase by hearing their advice on our communications approach and research with the public. The input from our stakeholders, including our assurance groups, meant that we were able to ensure public research was pitched at the right level and communicated clearly. Below is a summary of how we have been listening to our stakeholders, and how we will continue to do so.

External assurance group

GP Data Patient and Public Engagement and Communications Advisory Panel

This includes members of the public, patients and representatives from organisations representing the voice of patients and the public.

Overview of purpose 

  • advise on the development and implementation of the four phases of the communication and engagement strategy.
  • advise on who, how and when to engage patients and the public, to help shape the emerging communications content.
  • ensure communications content, materials, and activities are informed by patient and public views
  • read the terms of reference

Engagement method

  • virtual meetings

Summary of activity

  • bi-weekly meetings.
  • focused discussions about all aspects of the programme and its design and how that impacts on public trust and understanding

Key outcomes

  • provided continued patient feedback and scrutiny on development of listening phase communications.
  • provided feedback and scrutiny on proposed research approach with the public and general practice staff.
  • provided feedback and scrutiny on proposed design and delivery of key aspects of the programme, including the Trusted Research Environment (TRE) and type 1 opt-out service.
  • published a blog to promote the work of the panel and stressed the continued importance the voice of the public and patients will play in the programme as it progresses.
  • actively agreed minutes and action notes ahead of publishing
Check and Challenge Advisory Group

This includes representatives from a number of organisations/areas with knowledge and expertise in data usage and security, and the GP profession.

Overview of purpose 

  • hold constructive discussions to validate approaches and options being considered
  • maintain visibility across key stakeholder groups
  • promote improved engagement and communication with key programme stakeholders to ensure a fully transparent approach is being taken throughout programme planning and delivery
  • read the terms of reference

Engagement method

  • virtual meetings

Summary of activity

  • bi-weekly meetings.

Key outcomes

  • maintained engagement with the programme, providing input and offering challenge to support planning.
  • provided feedback and scrutiny on development of all aspects of the  programme.
  • provided continued patient feedback and scrutiny on development of listening phase communications.
  • provided feedback and scrutiny on proposed design and delivery of key aspects of the programme, including the Trusted Research Environment (TRE) and type 1 opt-out service.
  • provided feedback and scrutiny on research with the public and general practice staff.
  • published meeting outputs
Information Governance Expert Liaison Group

This includes experts from NHS Digital, NHS England, Department for Health and Social Care, Information Commissioner’s Office (ICO) and the Office of the National Data Guardian (NDG). 

Overview of  purpose 

  • consider key data protection matters and associated documentation with key IG stakeholders.
  • provide key IG stakeholders with the opportunity to review and discuss issues and provide advice and feedback on the IG elements of the GPDPR programme.
  • promote improved engagement and communication with key IG stakeholders, patients and the public
  • read the terms of reference

Engagement method

  • virtual meetings

Summary of activity

  • monthly meetings

Key outcomes

Whilst these are our formal assurance groups, and they're important to the programme, they're not the entirety of our stakeholder listening. It’s important that our engagement has breadth and depth across different demographic groups, as well as differing levels of knowledge, attitudes and behaviours. Below is a summary of which groups we’ve listened to and the key outcomes.

Stakeholder group

General public

Engagement method

Qualitative and quantitative research.

Summary of activities

  • nationally representative online survey with 1700 people, plus a booster sample of 360 people with varying degrees of digital exclusion
  • 4 online focus groups with the public, covering type 1 data opt outs, data security and TREs
  • 5 online focus groups to discover potential campaign messaging and approaches

Key outcomes

  • key insight to inform engagement phase
  • baselined awareness, knowledge, attitudes and behaviours
  • published blog and web content
  • set baselines around awareness and understanding across key indicators

Read our public survey summary report.

GP profession

Engagement method

  • virtual meetings
  • workshop
  • pilot survey

Summary of activities

  • bi-weekly meetings with representatives from GP profession representatives.
  • membership on Check and Challenge.
  • pilot online survey with sample of 9 integrated care system (ICS) areas.
  • extended GP profession workshop.
  • attendance at Joint GP Information Technology (JGPIT) committee.

Key outcomes

  • maintained engagement with the programme and in principle support
  • provided feedback and scrutiny on communications programme and research with general practice staff
  • supported the development and content of the pilot GP survey
  • supported the development of the GP Staff survey which is a key part of our Engagement Phase activity
  • support for the tactical option
  • learnt from pilot survey used to refine the national survey
  • supported dissemination of the national GP survey
Research community

Engagement method

Virtual meetings

Summary of activities

  • regular updates at Research Advisory Group.
  • established links with research charities.
  • ran a focus group jointly with Cancer Research UK and British Heart Foundation to listen to their expert patients group.
  • representation on the Check and Challenge Group

Key outcomes

  • maintained engagement with and support for the programme
  • access to and engagement with wider patient panels
  • building advocacy
  • received expert patient advice on the sensitivities of GP data, appropriate language and how best to engage with the public
NHS England Transformation Directorate policy

Engagement method

Virtual meetings

Summary of activities

Bi-weekly cross-organisational meetings with NHS data communications and policy professionals.

Key outcomes

Alignment of activity, mutual support and ensuring best use of collective resources.

Key insights

The majority of the public are aware of GPDPR and opting out

We found that 52% of the public are aware of GPDPR and 62% aware of an ability to opt out. There are some groups that consistently have higher awareness, including younger populations (18- to 34-year-olds), those in social grade A1 and people with long term health conditions. People from London and those who were from a Black British / African / Caribbean background were more likely to have higher awareness of opting out.

Confusion around opting out and data

60% of the people we surveyed were aware of opting out. Furthermore, we found a higher than expected self-reporting rate of opting out (22%). This self-reported opt out rate is much higher than the national data opt out rate (c.5.4%).

Despite this, opt outs remain seldom understood, with only 12% correctly identifying what a type 1 data opt out does, with a slightly higher percentage understanding what a national data opt out does (18% to 22%).

We also found that people were confused by current terminology, with only 17% correctly defining pseudonymised data. Those who self-reported to have completed an opt out (either type 1 or national data opt out) were more likely to incorrectly define anonymised data than those who said they didn’t complete an opt out. This, coupled with the confusion around opt out understanding, has led us to hypothesis that:

  • some members of the public don’t know what they may have opted out from
  • some may have a disconnect between values / beliefs towards opting out and their actual behaviour (whether they have opted out or not)

Both of these hypotheses have implications for the work we need to do to ensure transparency and understanding and need to be investigated further.

Broad support for health data sharing

In our research, we found that both the public and general practice staff agree that health data should be used to improve health and care. Furthermore, sentiment towards the NHS using patient data to improve services and care increased from 66% in June 2021 to 74% in 2022.

The public have some assurance needs which need to be met, including being sure their medical histories can never be made public, data not being sold ,and data being used for specific purposes such as addressing health issues. In addition to these assurance needs, support drops for some when we discussed approved third parties accessing data within a TRE.

We also found a noticeable trend in appreciation of health data use. Audiences from older age groups are more likely to hold a positive sentiment towards data sharing. For example, 78% of 55 to 64 year-olds agree their patient data should help the NHS improve services and care compared to 63% of 18 to 24 year olds. Qualitatively, we found that younger audiences held more reservations around health data being used and wanted more reassurances on key areas, including data not being sold and choosing how their data would be used.

We need to simplify how we communicate

People don’t understand health data and many have limited ‘bandwidth’ to want to proactively learn more. Through our survey and qualitative research, we have found that there is a need to simplify how we talk about data, including terminology such as pseudonymised data, type 1 / national data opt out and trusted research environments.

Without making changes to the way that we communicate, we risk individuals not making informed decisions when deciding how their patient data should be used. We have consistently found that patients and the public want clear, easy to read information without jargon, this includes how we name and talk about the data opt outs.

We also know that some people will want access to detailed information and recognise that this should always be easily accessible and available for those who want to find out more.

37% of the public surveyed think they’ve opted out or feel that they might opt out

This group holds negative sentiment towards how health data is used relative to others surveyed and individuals are less likely to be reassured on messaging around data security and data storage. Furthermore, this group is more likely to be knowledgeable on terminology when discussing health data use and opting out. Statistically, men, people aged 18 to 34 year-olds or those from socio grade A are significantly more likely to be part of this group than people from other demographic groups.

We need to engage more deeply with this group to better understand their thoughts, feelings and attitudes and to ensure that we understand how to best reach them so that any communications campaign reaches all audiences.

Patients support data sharing to ensure GPs are paid fairly

Patients and the public showed strong support for patient data to be used appropriately to ensure GPs are paid fairly, even if they have submitted a type 1 data opt out. The main concern for this audience was to not negatively impact their local GP services as a result of opting out and wanting to ensure continued appropriate funding.

General practice staff need support to increase understanding

In our pilot GP practice survey we found that general practice staff don’t feel confident in explaining technical areas around data sharing to patients, such as data security and risks around sharing data. We also found that while general practice staff have a degree of awareness of GPDPR, few are able to explain the programme to their patients. This suggests that we need to communicate better with this audience to raise awareness and to equip them to be able to confidently engage with their patients on these issues.

General practice staff are supportive of health data being used

Early findings suggest that the general practice community are supportive of patient data to be used to improve health and care for patients. Furthermore, they are supportive of the GPDPR programme aims in principle but would like more assurance around data security and want to be more informed on the programme.

Knowledge gap analysis

The listening phase enabled us to build a foundation of knowledge around perceptions and awareness across the general practice community and the public, which will help us to engage in a much more meaningful way. We have gained knowledge which has confirmed anecdotal evidence and given us confidence in some of our initial hypotheses. Alongside this knowledge, we have started to see new trends and patterns that we need to explore further, as well as questions we don’t have answers to yet. Using this, we have developed a knowledge gap analysis to help shape the engagement phase.

What we want to explore next

The listening phase has helped to provide us with a good foundation of knowledge. We are aware that there is still more work to do going into the engagement phase to fully understand how we can best communicate with our audiences about GPDPR. Based on the existing knowledge, we have identified the following knowledge gaps:

  • How the general practice community interacts with patients about data
  • How the general practice community wants to learn more about the programme (e.g. training materials, information packs, toolkits)
  • Public expectations of how general practice should handle their data
  • What influences specific target groups when discussing opting out / opting back in
  • Why such a high proportion of the public think they have opted out and what their behaviour has been (e.g. have they opted out of something else?)
  • Attitudes of data users (e.g. researchers, data analysts, planners etc.) towards GPDPR, TREs and opting out
  • Attitudes, perception, knowledge and understanding of 13- to 18-year-olds towards health data
  • The concerns that individuals hold towards perceived sensitive data and why
  • The concern people have about approved researchers, from organisations outside of the NHS, accessing pseudonymised data through a TRE
  • How the public understand ‘planning’ and ‘research’

Next steps

Now that we have completed the listening phase, we will be moving into our engagement phase. The purpose of the engagement phase is to enable us to produce an effective communications campaign to inform the public about how general practice data is used to support the NHS improve health and care. Although we have completed the listening phase, we are committed to ensuring that we continue to listen to audiences and collate feedback where possible. We are anticipating the engagement phase to run from summer 2022. Where there is a need for timescale flexibility, we are willing to ensure this happens to maximise engagement with the right audiences. This is important so that we are confident with the engagement completed and insight gathered to meet our aims.


1. Social grade’ refer to a classification system used to determine an individual’s social grade based on occupation. Social grade A refers to those within higher managerial, administrative and professional occupations.

Last edited: 4 August 2022 4:14 pm