Patient data; how people feel about their data being shared by the NHS

On May 25 – in addition to GDPR reforms – people were given the choice to opt out of their patient data being used for reasons other than their care.

Together with ComRes, Healthwatch England conducted a poll to better understand the public’s views and concerns on sharing their data. The poll found that 77% of the public are confident in the ability of the NHS to protect their patient data; however, respondents also voiced concerns with the way organisations handle data and some were worried about how their information was used.

Patient records play a vital role in medical research and supporting positive changes in health and social care – what is the right way forward? Jacob Lant, head of policy at Healthwatch England shares findings and conclusions from the survey.

People’s patient records play a vital role in informing medical research and changes to health and social care. Advances in understanding diseases and developing treatments have been possible because of access to patient data, resulting in positive benefits to many people. Today, with the help of technology, researchers are making huge progress in areas such as genomics – which could revolutionise health and care for future generations.

However, with recent news headlines reporting issues relating to the way organisations, such as Cambridge Analytica and Facebook, handle our data, people are concerned about how their information is used.

On 25 May the NHS gave patients the choice of opting out of their confidential patient information being used for reasons other than their individual care. Together with ComRes, we polled 2,072 people in March to find out more about their views and concerns on the sharing of their data.

Are people happy to share their patient data?

Overall, most people are positive about sharing their patient data. Seventy-three per cent of adults told us they would be happy for the NHS to use their information to improve the healthcare treatment of others. When compared with other sectors – including banking, retail and government – the health sector is seen as the most trusted in terms of keeping people’s data safe, and the most likely to use data appropriately. People trust the NHS.

However, the NHS often needs to bring in the expertise of other organisations to help process and analyse the data collected. Although the practical need to do this is clear, people have less trust in these partner companies; two-thirds of people told us they thought they might later regret their data being shared with NHS partners, such as technology companies and universities. In light of this the NHS needs to ensure it is transparent about who its partners are and how people’s information will be used.

More people are aware of data security issues

Just over half of the people we polled (53%) said they were more aware of data security issues than they were three years ago. Similarly, 57% also said they were more concerned about how their data, generally, is being used.

Yet greater awareness does not directly link to greater concern. The research showed that, whilst younger people, in particular, were more likely to be aware of data security issues, they were also less likely to be concerned about how their data is used.

Did the hacking of NHS computers in 2017 have an impact on public trust?

The majority of respondents (85%) said they had heard of the hacking scandal that hit the NHS in May last year. Interestingly, more than half (53%) of people who had heard about this told us it made them less confident in the ability of the NHS to protect their data. So, whilst overall confidence in the NHS remains high, it is clear that specific crises run the risk of eroding public trust over time.

In contrast, positive data initiatives, such as the ground-breaking genomics programme which is seeking to map 100,000 genomes of people with rare diseases, had much lower levels of awareness. Such programmes also seemed to have less impact in terms of improving people’s perceptions of how data is used.

The challenge facing health and social care

Since the data opt-out came in to force on May 25 everyone now has the opportunity to decide how their confidential patient information is used. All the research we have done over the last few years – and indeed that conducted by others – suggests most people are likely to continue to allow the NHS to use their records to support the development of new treatments and to help plan services – but some others will choose not to.

Importantly, the opt-out system will enable people to change their minds at any time; it is, therefore, vital that those using the data don’t become complacent. It is up to the NHS and social care sector to – not just keep our data safe – but to continuously show all of us why it is so important that we continue to donate our data.

What does the national data opt-out mean for you?

The NHS has introduced a new service to give people more control over how their confidential patient information is used for research and planning. From May 25, patients will have the choice of opting out of their confidential patient information being used to help the NHS improve how it runs services.

There are strict rules in place about how this data is used and who will have access to it. For example, confidential patient information will not be used for marketing or insurance purposes (unless specifically requested and approved).

The NHS will still be able to use anonymised data (information about patients with personal details removed).

About Healthwatch England
Healthwatch England is the independent national champion for people who use health and social care services. It was created to make sure that those running services and the government put people at the heart of care. 

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