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What do people think about proposed patient data standards?

14/09/16

The Government has been consulting on new standards to strengthen the security of patient information and to help people make informed choices about how their data is used.

To help with our response to this consultation, we collected people’s views on some of the broad principles behind the proposals. Find out what people said and download our consultation response.

What are the Government proposals?

The NHS holds large amounts of patient data. This information has an important role to play in both informing medical research and shaping changes to health and social care services.

Over the last two years, people have told the Healthwatch network that they understand this and are broadly willing to share their data as long as the right safeguards are put in place.

Over the summer, the Government sought views on new standards to strengthen the security of patient information and to help people make informed choices about how their data is used.

As well as promoting the consultation, we also ran our own survey to inform our response to the consultation.  

People's views on data security

We received 147 responses to our survey. Overwhelmingly those who responded supported patient data security and information management being given the same priority by the NHS as clinical and financial management. 

Nine in ten people said it was extremely important that all NHS and care staff, not just IT professionals and managers, should be fully trained in how to keep data safe and share information appropriately.  

The majority also supported the idea of stronger sanctions against those who are found to have breached rules around data use.


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People’s views on consent

The Government proposals suggest an approach that would enable people to choose whether their personal data can be used for medical research purposes
and improving how the NHS runs services.

Those who responded to our survey had mixed views about the level of choice the proposed opt out offers and how confident they are that care services will be able to keep their data safe. 

One of the most common questions people raised was around the use of anonymised data and what this would mean in practice.

The responses also suggest that people still don’t know where to go to for more information and advice about the proposals, with a number of participants calling on the Government and the NHS to step up their communications activity.

Issues to consider

Our full response to the Government consultation sets out in more detail the findings of our survey and highlights a number of key areas, such as a much greater focus on communications, which the Government and the NHS will need to consider before rolling out any future data sharing initiatives.

Download our full consultation response 

* The presentation above is a  summary of the responses of 147 people who took part in our on-line survey between 5 August and 7 September 2016 

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