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https://healthandcaredatasharing.blog.gov.uk/2014/07/24/peoples-information/

Why does the NHS need to use people’s information?

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This is the first of a series of  blogs I'll be writing to support discussion of our consultation, ‘Protecting Health and Care information’, published on 26 June 2014.

We know that sharing personal data between professionals is crucial for the delivery of safe and effective care.

But those responsible for commissioning our care also need to use our personal data, to ensure that resources are being used to deliver the most effective and efficient care and to ensure that the services they commission are targeted at the people who need them most.

Sharing personal health information and deciding who should have access to that information, and how they safeguard it, is a sensitive issue.

My team has been looking at how we can ensure that how those planning and commissioning local health and care services can have access to the information they need and how we can ensure that the information they hold about individuals is looked after properly.

I was closely involved in Dame Fiona Caldicott’s review into information sharing. She heard from patients, carers, and the public very clearly that their wish was for data to be shared safely for the benefit of others, but also that they want to know how their data is being used and to have control over how it is used.

There are three main reasons that those planning and commissioning services need personal data

  1. To target services at the people who need them most in the local community and to check that those services have been received (commissioning).
  2. To make sure people with complex needs are treated properly. For example, in the report on the Winterbourne View review it was emphasised that NHS managers had to be able to access long term resident’s personal medical records to check on the care being provided to people to help prevent problems like that happening again (this is called case management).
  3.  To make sure public money has been spent in the way it was intended.

Most of the time, commissioners don’t need to know the name of the individual concerned but they may need information that could be used to identify someone, such as:

  • the NHS number, so that information about possible health risks or specific treatments that may benefit an individual can be passed to those who provide care to that individual
  • a hospital number, so that when a commissioner checks the care provided the hospital can identify the person concerned
  • a post code, so that commissioners can target services to the right places

The organisations that need this sort of information are clinical commissioning croups (CCGs) and local authorities. CCGs are local organisations, led by GPs, which take decisions on what health services should be available in their area and allocate the money to purchase those services. Local authorities do the same for adult social care

We have launched our consultation on how to enable CCGs and local authorities to use information in the safest way possible, when they are carrying out these important tasks.

The consultation asks about the sort of controls and safeguards that we need to put in place to protect patients’ data when it is shared; and that it is only shared when that is the only option. The consultation on these proposals is running for six weeks until Friday 8 August. We will use the comments that we receive to help draft the regulations to create the legal framework for safe sharing of personal information.

The issues in the consultation document are complex, so I will be using this blog to explain the consultation and to seek views on the issues that we are trying to tackle. I would welcome your comments, including on whether something needs more explanation.

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2 comments

  1. Comment by Helena Poldervaart posted on

    It's great that you're doing this blog, but a consultation written in plain English first time round would have been even better. Those of us who aren't familiar with the jargon are now in the position where we're expected to read the consultation, check if it's explained in the blog and then work out a response. As the blog isn't covering everything in one go, that also means repeatedly revisiting until everything's been covered. Who's going to do that ?

    I'm sorry to be so negative about this and as I say, the blog is a great idea, but it shouldn't be essential translation material !

    Reply
    • Replies to Helena Poldervaart>

      Comment by Mark Davies posted on

      Helen - Thank you for your comment. I am glad you think that this blog is a good idea.

      The blog is meant to be a less formal way of holding an open conversation with interested people and highlighting some of the main issues covered in the formal consultation. It's not intended to cover everything but if there is a topic on which you think a blog would be helpful, do say so.

      I recognise that there is unexplained jargon in the consultation document. I'll make sure we keep this in mind for any future content on this topic.

      Reply

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