If you have opted out, recently or before, your choices are now being honoured.
Thanks to all those who helped make this happen – especially you, our supporters, donors and friends.
The institutions involved did the right thing in the end, even if they tried all the other things first.
What just happened? Your opt out honoured
On Wednesday, the HSCIC announced that they had received permission from the Secretary of State to finally honour his promise to you. You can opt out of data leaving the HSCIC for purposes beyond your direct care, and that is what happens. When he created the opt out that you took up, NHS England, who was then responsible for it, didn’t think it would matter.
The tickbox that you and 1.2 million other people filled in is now being honoured. The announcement says it must be done by this time next week; in practice, we are happy that this is effective with immediate effect.
Until the public consultation on the Caldicott Review, there are a small number of narrow temporary exceptions (3), and some temporary gray areas (5). But in the main, it is now done. If any of those concerns are particularly concerning to you, please let us know. We’ll be writing to HSCIC with some clarification questions next week.
The next hospital dataset to be released will be the cleaned up “full year” data, which replaces past each month parts for April 2015 to March 2016. This is the critical release which really matters. Consent will be respected for this release, and data about those who have opted out will not be included.
The HSCIC has also undertaken with the Information Commissioner to reissue the 2014 – 2015 data to those who already received it. By contract, they are required to replace old data with new. That undertaking is the direct result of a medConfidential complaint to the ICO.
GPs have been able to honour their part since you gave them the form.
In effect, for current and future projects, as much as it could have been, it is as if your opt out, for data leaving HSCIC for purposes beyond your direct care, was honoured in April 2014.
The announcements this week are not the end of this process – there is a great deal left to do.
The Caldicott Review of Consent is going to propose a comprehensive and permanent solution. That solution should satisfy concerned patients into the long term, resolve the grey areas and simplifies the whole thing. It will be the subject of a public consultation, and then legislation.
But as of Wednesday, the current state is now consensual, increasingly safe, and somewhat transparent. Reducing the number of copies of data that are made will reduce the number that can be lost or stolen. More transparency will mean that you will know that your wishes have been honoured – you wont have to trust they have.
If you’ve previously had a discussion with your MP on this topic, you may wish to get back in touch with them and thank them for their help, now that the Department of Health has done the right thing, and your wishes are being respected.
MPs often hear about problems, and less often hear about what happened as a result of their help, especially in a long term project like this has been. (You should probably make clear that this is a thank you note – it might confuse their busy offices if it’s unclear…) Also, there was an election in the interim, and some MPs will have changed.
For us, it’s not getting any quieter. There are other organisations that don’t wish to act as if their world has changed. Most seriously, there are a few other projects that see the style-first approach of care.data as a handbook, not a cautionary tale…
It never ends. But this week, a lot got better as a result of our work and your help. Thank you for your support until now, and hopefully into the future.
PS – our especially deep gratitude to all those who donations also helped. We couldn’t have done this without you.