Your chance to shape how the NHS uses your data



The National Data Guardian played a central role in giving people more control over how their data is used by the NHS. Now you can have your say on what their priorities are as they move into their next phase.

Doctor filling out a form with medication in the background.

Research by Healthwatch has consistently shown that people trust the NHS with their data.

However, as the way in which data is used by hospitals, GPs and care services changes, it is important the public’s trust isn’t taken for granted.

The National Data Guardian has been a consistent champion for this in recent years, and last May played a central role in giving people more control over how their data is used by the NHS.

What is the National Data Guardian?

The National Data Guardian advises and challenges the health and care system to help ensure that people’s confidential information is safeguarded securely and used properly.

Last year, Parliament passed a new law enhancing the role of the National Data Guardian. This means that this year it will become fully independent, with new powers to issue advice and guidance on to set out how data should and should not be used.

Have your say

The National Data Guardian is now asking you to share your views on what its priorities should be for 2019-20.

The consultation sets out four proposed priorities and potential areas of interest for the National Data Guardian within each of these. You can help shape these.

Four proposed priorities:

  1. Improving transparency across the NHS and social care
    In particular encouraging greater/easier access for patients to see their health and care records and who has viewed/used them.
  2. Promoting the role of patient data in supporting innovation
    Including exploring how patients want and expect data about them to be used within health technology, and encouraging the NHS to communicate more about why access to data is so important.
  3. Training and support
    Reviewing the current guidance and promoting training for professionals to help them understand their roles and responsibilities when using data. This is important to ensure data is used appropriately but also to prevent the data protection rules being seen as an excuse not to.
  4. Clarifying the law
    Including clarifying ‘consent’ under common law and data protection law for clinicians and the public, and explaining what constitutes ‘reasonable expectations’ in relation to the use of data.

Tell the National Data Guardian what you think

The consultation closes on 22 March. Have your say on the different priorities via their survey.

Tell them what you think

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Apart from five years studying in Oxford I’ve lived most of my life in London where for many years I was Head of English in a prestigious girls’ school, but since taking early retirement and heading West to be nearer to my two daughters - settling in Torbay with my wife, Anna, in 2011 - I’ve worked in the voluntary sector. I took on the role of Service Provider, for example, promoting the Red Cross Torbay Navigators Project, while now I’m a Trustee and part of the Media Team for our local Healthwatch. I’m a governor at Torquay Academy, too, giving me the chance to stay up to date with what’s happening in the world of education. Other interests, aside from friends and family, include art and art history, reading - from contemporary fiction and poetry to Elizabethan/Jacobean literature - history, politics, cooking, walking, and music, in particular Bob Dylan, the blues, and early Elvis. I love writing, too, with one novel published so far – Elvis in Wonderland – and another, Who’s There?, that still needs plenty of work!