Caroline Flint

Standing up for Don Valley.

NHS Data - time for Government to get it right

Caroline Flint writes: "The Government is making a hash of Care.data"

The Government wants to make use of NHS data, known as Metadata.  The programme for planning this is called Care.data.

The fact is that since the early 1980s the NHS has collected "Hospital Episode" statistics - basic facts about each time a patient comes into a hospital, what it was for, and what was the treatment.  In many ways, this is not a problem, as long as the information is anonymous.  There are lots of reasons, such as research and planning treatment, why we would want to know, e.g. how many men in Doncaster went to hospital with chest pains etc; howe many people use a certain proscription.

The problem is that, at the end of the day, this is our information, each patient; and so the Government was meant to give us a right to opt out - to say, "No thanks, please don't pass on records of my hospital visits".  The Government has to be open about who gets to use this data?  Hospitals?  Medical research councils?  Universities? Or private insurance companies?  The Government must be straight with us all.

This is where the incompetence begins.

Most of the information is held by local GPs. The Government set a deadline by which we all have to write to our GP to ask to opt out.  Well that is simply daft.  How many people will be able to write to their GP?  How many even knew they had to?

I don't think most people knew, and the Government doesn't even know how many people were aware of the information leaflet they produced.

Second, there is clearly inadequate safeguards for people with learning disabilities, autism or sensory impairment.  They have a right to opt out too and the leaflet must be accessible.

The only way to opt out for most patients is to write to your GP or visit the practice.  That is not good enough.

Finally, the Care Bill removes the Secretary of State's responsibility to sign off the use of this data. Isn't that what we have Ministers for?  The Secretary of State has to protect our data - all the more important in this electronic age. So the Secretary of State must sign the Order and be held to account for it.

The Government has been forced to postpone the Care.data implementation for six months.  I hope they use the time to get this right, in the interests of us all.

 

 

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