We found that two thirds would be happy for their data to be shared, as long as it was anonymised. But despite this willingness, only 1 in 5 said they feel sufficiently informed about how such data would be used. More than half said they fear they may regret giving permission for their information to be shared.
This nervousness may be due in part to concerns reported by the media about how the NHS currently uses people’s records. If people are then reluctant to let their data be shared, this can lead to delays in the development of new treatments or vital changes to services.
Over the last two years local Healthwatch across the country, including in Hampshire, Blackburn with Darwen, Leeds, Somerset, Oxfordshire, Bedfordshire, Islington, and Surrey, have spoken to their communities about data sharing.
Based on these conversations, we know that there is a real opportunity for the NHS to capitalise on people’s openness to granting access to their data. What is crucial is that services are transparent about when, how and why people’s information will be shared.
The Government has committed to further exploring this issue, after commissioning Dame Fiona Caldicott to review data sharing and the opt-out mechanisms used across the NHS.
We look forward to further consultation about the issue when the findings of the review are published later in the year and to working with the Department of Health’s National Information Board to help build public trust in how the NHS handles data.
Summary of survey results
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 could 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.(Strongly agree 2% and Tend to agree 14%)
63% support the right to be able to opt-out of 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%)