Public survey summary report - General Practice Data for Planning and Research (GPDPR)

This research sought the opinions of the public on GPDPR using a quantitative survey. It has provided a solid foundation in understanding awareness, perceptions, and the messages that might resonate most in future communications.

There are high levels of trust in the NHS using patient data and accessing patient data, however, when considering other approved organisations accessing data this trust falls.

GPDPR was a relatively well-known but little understood topic which elicits some confusion, as evidenced by the fifth of the sample who believed they had opted out; a much higher percentage than have opted out in the population.

Broader benefits of GPDPR, such as improving the provision of local NHS services, held higher appeal than more specific benefits, such as researching the long-term impact of coronavirus. The biggest concerns that will need to be addressed included data security and who would have access to the data. Amongst those who believed they had opted out there were also fears over the NHS selling data to private companies.

There is little interest in proactively finding out information about GPDPR, so push communications are likely to be needed. An NHS source would be most trusted to provide this and the messages that gave most reassurance were the pseudonymisation of data and only granting access to patient data to those with a legal basis. 

This research indicates those most likely to opt-out are more likely to be male, aged 18-34 and from an A SEG (the most affluent in the population).

The research sought to identify awareness of GPDPR and opinions of the issues surrounding it amongst the public. The results of this research will inform an engagement phase with the public and a future communication campaign.

A quantitative survey was conducted with three sample groups:

1. A nationally representative sample of 1703 completed online.
2. A boost sample of 309 individuals who are less engaged online (browse online but do not use social media or make non-food purchases online) completed online.
3. An offline sample of 50 individuals who do not use the internet completed by phone.

For simplicity, the figures quoted in this summary document are those from the nationally representative sample. Full findings including all sample groups are available in the main PowerPoint report.

Awareness and understanding

GPDPR is a relatively well known but little understood topic. Over half of those surveyed were aware of GPDPR (52%) and of the option to opt-out (62%). However, there was little understanding of some of the concepts surrounding GPDPR. Few had accurate knowledge of what pseudonymisation meant (just 17%) and understanding of the two types of opt-out was low: only 18% of the sample correctly understood a Type 1 opt-out.

Total percentage may not add up to 100% due to rounding of numbers.

The most recalled information was that patients can opt-out of sharing data (32%) and that GPDPR will improve local NHS services (30%). The sources of this information were varied: 24% stated they heard via the NHS website or app, 19% through social media, 19% via word of mouth and 19% from a healthcare professional.

Views on data sharing more broadly

Trust in NHS use of data has increased since 2021. However, there are lower levels of trust in organisations outside of the NHS accessing this data. Under half agreed it was OK to grant access to patient data to approved individuals outside of the NHS (45%).

NHS organisations are the most trusted to access patient data: the NHS (trusted by 60%), GP surgery (60%), NHS England (54%), local hospital (47%). This is followed by NHS Digital (35%) and medical research charities (34%).

Broader benefits of GPDPR held more appeal than specific benefits. For example, improving local NHS services (49% selected as one of the top 3 most important) or development of cures and treatments for serious illnesses (40%). One third had no concerns about GPDPR and for the remaining two-thirds the biggest concerns were data security (22%) and who has access to the data (16%).

A series of messages were tested designed to reassure about GPDPR data storage and the way access to this data is granted.

Half were reassured by the messages tested but one fifth of the sample were not. Pseudonymisation of data and data access only being granted to those with a legal basis were the messages that provided the most reassurance with 53% of the sample saying these were reassuring.

Total percentage may not add up to 100% due to rounding of numbers.

There were low levels of interest in seeking out further information on GPDPR but if information were provided to them an NHS source would be most trusted to author it: 46% trusted the NHS website to provide information.

Opting out

A higher than expected proportion of the sample believed they had opted out (22%) and over a quarter don’t know if they have opted out or not (26%), suggesting some confusion over opt-out. Just under half of those who said they opted out claimed to have registered a national data opt-out (42%) and a fifth don’t know which opt out they have chosen (20%). Figures show 5.35% of the population have registered a National Data Opt-out compared to the 9.24% of our full sample claiming to have chosen the National Data Opt-out. Reported reasons for opt-out revealed that the biggest concerns were privacy (49%), data security (48%) and data being sold to a private company (42%).

Total percentage may not add up to 100% due to rounding of numbers.

None of the presented list of motivations to opt back in generated high levels of enthusiasm with a fifth saying none of them would change their minds. 

Amongst those who had not opted out, almost a fifth said they might in future (19%). When prompted, a third claimed that no organisations would influence this choice and the most influential beyond this were NHS sources: NHS website 26%, NHS healthcare professional 24%. Information about data security (19%) and recommendations from trusted individuals/organisations (17%) were the most likely types of information to influence future decisions over whether to opt-out.

A majority would trust NHS Digital to implement an opt-out: 41% trusted NHS Digital and their GP practice, and 17% trusted just NHS Digital. A majority would prefer to register their opt out choice online: 39% would prefer to complete an online form, and 30% to register a preference on the NHS app.

Demographic differences

Three distinct groups emerged from the research:

• Those who state they have opted out OR are likely to do so in future (37%)
• Those who remain unsure about whether they will opt out in future (18%)
• Those who state they are unlikely to opt out in future (45%)

Those who believe they have opted out or are likely to were more likely to be male, younger, and more affluent. This group had a higher awareness of GPDPR and opt-out and were more likely to say they had concerns about GPDPR than the other groups.

Those unlikely to opt out were more likely to be a White ethnic background and to be a B Socio Economic Group (SEG). This group were more positive about data sharing, more comfortable with the uses of pseudonymised data and saw GPDPR as having a range of benefits.

The ‘unsure group’ were more likely to be an Asian ethnic background and more likely to be a D or E social group (the least affluent in the population). This group were uncomfortable with many of the uses of pseudonymised data presented to them and were more likely to say the benefits of GPDPR didn’t matter to them. Beyond this they tended to have fewer firm opinions on the specifics.

Findings from this research will inform the engagement phase for GPDPR.