Will opting out affect the care you receive?

NHS England is very clear, even now: “…this will not affect the care you receive.”

However, displaying their all-too-familiar lack of attention to detail, there currently is a problem – a mess they’re leaving someone else to clean up. That’s no surprise in the ongoing care.data fiasco. The surprise this time is just how badly they cocked it up.

Due to a mistake with one of the objection codes*, everyone who opted out with it will need to be contacted to confirm the details of a new, as yet unspecified, arrangement. Opting out now should mean you are contacted in that group.

If you did opt out last year, NHS England is at least correct in saying that your direct care has not been affected. As of now, none of the opt out codes have been extracted and the care.data programme has taken no information from your GP’s systems.

But because the codes have not been extracted, HSCIC has no way to know whose data to prevent passing on to its customers. Data releases resumed last summer; you can see the organisations which have received data in HSCIC’s quarterly Data Release Register.

Unfortunately at this point no-one, including HSCIC itself, can tell you if your data has been released – which is one example of why we’ve been pushing for personalised Data Usage Reports. With those in place, you would know.

We are working hard to ensure that your opt out is honoured, and that it does what you were told it would do – by us, and by NHS England.

medConfidential believes that wanting to preserve your privacy in the NHS should not exclude you from digital services in the NHS. Anyone who attempts to claim otherwise is blackmailing patients. Again.

*We were shown details in a letter, a couple of minutes before we gave evidence to the Health Select Committee on the 21st January. we suspect NHS England knew some time before then, as the ‘Type 2’ opt out codes had originally been scheduled to be uploaded last autumn.

NHS England posted ‘Important information on data sharing opt out’ at 17:24 on Friday 23rd January. Unfortunately, while the title of its announcement isn’t limited to just the care.data programme, all of the salient bullet points are. Its use of the phrase “the opt out” (not opt outs) is far from reassuring, and signals an imminent attempt to re-write history and break promises.

You will note NHS England’s announcement omits to tell you what you’ve just read in this post. If you want to be kept up to date with comprehensible information and facts you can act on:

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We will not share your details with anyone else.

We will post more details as we have them on our blog, and in our next newsletter on 30th January.