NHS putting public trust in its ability to handle data at risk

News - 25 May 2016

Almost two thirds (64%) of people in Britain say they are happy for their personal health data to be used to support research as long as it is anonymised, bu less than 1 in 5 say they feel properly informed about current data sharing plans.

Almost two thirds (64%) of people in Britain say they are happy for their own personal health data to be used to support research as long as it is anonymised.
Yet less than 1 in 5 (17%) say they feel properly informed about current data sharing plans, and more than half (56%) are worried they may later regret the decision to let their data be used.
NHS can capitalise on people’s willingness to become ‘data donors’ but only by being transparent about when, how and why data is being shared.

Conversations with the public via the Healthwatch network show that people clearly recognise the value of data sharing to support medical research and improve the quality of care we all receive when we get sick.

However, concerns over how the NHS currently uses patient records, as reported in the press, could undermine public trust and cause avoidable delays in the use of data to develop new treatments, according to health and care consumer champion Healthwatch.

Healthwatch recognises the practical challenges involved in communicating such issues to the public, but there is an ethical duty on all NHS organisations to clearly explain when, how and why they plan to share data.

The importance of building public understanding and trust has been underlined by the Government’s decision to commission Dame Fiona Caldicott to review data sharing and the opt-out mechanisms used across the NHS.

We look forward to further consultation on this issue when the findings of Dame Fiona’s review are published later in the year and to working with the Department of Health’s National Information Board to help build public confidence in how the NHS handles data.

Commenting on this latest story, our Interim Chair, Jane Mordue, said:

“People tell local Healthwatch they recognise the societal life-saving benefits of sharing their data, putting it in the same terms as giving blood or registering as an organ donor.

“At the same time they understandably want to know who will have access to their medical records and for what purposes. Even in circumstances where there is no legal requirement to seek consent, having open and early conversations with the public about their plans and making people aware of the right to opt-out is both the ethical and smart thing to do.

“The NHS is still in the very early stages of realising the possibilities presented through mass data, but they need to build a strong foundation of trust with the public before any benefit can be truly realised.”

Dame Fiona Caldicott, the National Data Guardian, said:

“If the public trust health and care services with their data, there can be huge benefits for everyone, from researchers making breakthroughs in life-saving medicine to regulators spotting quickly when things go wrong.

“Healthwatch is absolutely right to highlight the need for an honest and ongoing conversation about how data is used and what choices people can make.”

Over the last two years local Healthwatch across the country, including in Hampshire, Blackburn with Darwen, Leeds, Somerset, Oxfordshire, Bedfordshire, Lambeth, and most recently Healthwatch Surrey, have been having conversations with their communities about data sharing. These conversations have found that if the parameters of record sharing are kept within the confines of healthcare and research, and there are procedures in place to ensure security, confidentiality and accuracy, there is strong support for sharing all or part of their health and care record with all or some of the professionals involved in their care.

These findings have been supported by recent polling of 2044 British adults conducted by YouGov on behalf of Healthwatch England in February this year.

Summary of findings

64% of respondents agreed they would be happy to donate their personal health data to help research if it was anonymous. (Strongly agree 22% and Tend to agree 42%)
Similarly 69% agreed that if their personal health information can help others, they would want it to be shared, as long as it didn’t have potential consequences to harm them – e.g. potential employers or insurance companies couldn’t access it. (Strongly agree 24% and Tend to agree 45%)
However, 56% said that they were worried that they may later regret agreeing to share their personal health data with third parties. (Strongly agree 20% and Tend to agree 36%)
68% of those surveyed said they want to be kept informed of large national health data sharing programmes. (Strongly agree 24% and Tend to agree 44%)
But when asked to think about the information they may have received to date about data sharing and the extent to which they currently feel informed only 17% said well informed. (Very well informed 2% and Fairly well informed 14%)
63% support the right to be able to opt-out of NHS data sharing initiatives at any point. (Strongly agree 24% and Tend to agree 39%)
When asked 37% agreed that they already identify themselves as information donors. (Strongly agree 10% and Tend to agree 26%)

All figures, unless otherwise stated, are from YouGov Plc. Total sample size was 2,044 adults. Fieldwork was undertaken between 29th January - 1st February 2016. The survey was carried out online. The figures have been weighted and are representative of all GB adults (aged 18+).

For more on our work around patient views on data sharing please see our submission to the National Data Guardian review and our 10 principles of good data sharing.