Jacob Lant, Head of Policy and Public Affairs at Healthwatch England, writes about their latest survey on public attitudes to data sharing and the impact of data scandals on public confidence.    

At Healthwatch we’re all about people and how they experience health and care. Over the last five years we have seen first-hand how helping people share their stories can transform the way hospitals, GPs and care homes operate.

In Dudley for example, Healthwatch work with the local deaf community and the local hospital identified missed appointments as a major issue. Not only was this resulting in poorer health outcomes for people but it was also wasting precious resources. Healthwatch Dudley discovered that the primary reason was high levels of anxiety amongst patients over not being able to hear their names being called in reception. The solution was simple; provide deaf patients with handheld flashing LED remotes to alert them instead. Following the success of this approach in the local hospital, the scheme is also now being rolled out to local GPs.  

Stories alone are not enough

We know that stories alone are not enough. Data too has a huge role to play in shaping the future of care in this country. With better intelligence about patients we know the issues in Dudley could have been spotted sooner. Likewise the learning could be used to identify other areas facing the same or similar challenges.  

Data also has a major role to play in research. The ground breaking Genomics project that looks to sequence 100,000 genomes to understand rare diseases is probably the best known example. But there is so much more research going on, and over the coming years the benefits of data sharing will start to be realised across the whole sector.  

Public views on data sharing

Our engagement with the public on the use of their data has consistently shown that people trust the NHS. Our latest survey shows they trust the health and care sector more than other sectors including retail, banking, and other public services to use their data appropriately and to keep it safe.

The majority also support the idea of their patient data being used to support research and improve the delivery of care. Our latest poll suggests 3 in 4 back the idea, which is consistent with pretty much every poll I have read over the last three years. 

But whilst overall support remains strong, high profile scandals around the use of data are potentially eroding public support.

Take, for example, the WannaCry hack that affected a third of hospitals in England last year. A staggering 85% of people told us they were aware of the incident, with 53% saying it negatively affected their trust in the health service to protect their data.

When we compare this to examples of positive data use, such as Genomics, awareness is much lower.   

The impact of the opt-out

From 25 May people will be able to log-in online and set their preferences for how health and care services make use of their confidential patient information.

The sheer amount of work that has gone in to developing the opt-out should be commended. This is a complex issue, but absolutely right that policy makers have been grappling with it to inform people and make it easy for them to express their choice.

But with this option now available, every time a story appears in the press about a potential data breach or patient information being used without permission, people will be able to exercise their rights and opt-out. This presents a very real challenge for the research community.

So in conclusion, and to steal a quote from Spider-Man for a moment, “with great power comes great responsibility”. Every time the system gets something wrong there is a risk of a mass exodus which could compromise the quality and depth of the data available for researchers. So, in a very real sense, a careless or complacent attitude to the way data is used could cost lives.

The opt-out coming in to force is not the end of this policy debate. It must be seen as the start of a new phase for the health and care sector, one that will require researchers and planners to continually make their case and demonstrate why it is so important that we make our data available to them.

Find out more

You can read the results of the Healthwatch England’s latest survey on public attitudes to data sharing here.