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

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.

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 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. 

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.

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.

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.

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.

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.

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.

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 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.

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.

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.

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.

Insight gathered through the listening phase has provided us with confidence in some areas. In other areas, we have started to see trends emerge in the data. These include the following trends:

• Younger demographics want more assurances about how health data is used; this covers choice, security and privacy. We haven’t yet explored where concerns stem from.
• The public see the benefit of sharing their data and want to avoid negative consequences to the NHS. We don’t yet know how the public would like to see this layered into a communication approach.
• There is a slight increase in the public having positive views towards how the NHS uses data since baseline data was captured in June 2021. What we don’t understand is what’s driving this trend.
• The general practice community believe that type 1 opt outs are a decision for patients to make themselves.
• The general practice community tends to be less confident in informing patients of their choices and data security. We want to understand how we can support general practice be better equipped at having conversations with patients about data sharing, or how we can reduce this burden to allow those conversations to take place elsewhere when appropriate.

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’

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.