9 December 2016 — MedConfidential
Jeremy Hunt changed his mind and is still selling your medical records
If you opted out of your hospital records being sold, Jeremy Hunt has changed his mind about your choice.
At the time, he said in Parliament (emphasis added):
“…this Government decided that people should be able to opt out from having their anonymised data used for the purposes of scientific research, which the previous Labour Government refused to do? When they extended the programme to out-patient data in 2003 and to A and E data in 2008, at no point did they give people the right to opt out. We have introduced that right”
The right Jeremy Hunt was so publicly proud of introducing, he has secretly taken away again. He was right to give it you – his election manifesto promised it would be there.
Over 1.2 million people, just like you, opted out of their hospital records being sold. The opt out has begun to work, but NHS confirms hospital records are still being sold.
The opt out process you followed in 2014 was the easiest way to opt out, but was not the only way. It was what the Government said would work. They have now changed their minds. We complained to the ICO, and they agreed with the Government.
As a result, we will have more details on what you can do to protect yourself in the new year. The Government had to perform a pirouette to pull this off, and may still have fallen flat on their face.
For now, you may wish to write to your MP and ask about this change. Ask your MP why the Government has gone back on its manifesto promise to let you opt out. Tell them why confidence in the privacy of your medical records matters to you. More details of the change are on our website.
Other steps you may wish to take to protect your medical records will become clear in the new year. If you are in immediate distress, our website contains a longer route to doing so now if necessary. If that is not the case for you, we’d suggest you wait until our full response is available. There is more to come on this, and the shabby secret is now out.
Jeremy Hunt offered you a convenient route which didn’t place an undue burden on your the NHS. If you took him up on that, he should keep his word. He retracted it in secret, and it took 6 months of work to find out what had actually happened. The opt out you took up for hospital has begun to be implemented, but is not yet fully in place. The opt out of your GP data, which is a separate tick box on the form you used, is not affected. The GP opt out is working, as it has been since you handed in your form.
Where does data go?
NHS Digital publishes details of where they send data each month, and why. Now they publish detailed official spreadsheets, we turn it into simple webpages. They are at https://dataregister.medconfidential.org
That gives a list of which projects honoured your opt out, and which companies got data on you anyway.
2017 is looking busy. The Government will announce what it is going to do. We hope they will do the right thing and honour your opt out (even if they try to do everything else first).
We rely on donations for some of our work, and anything you wish to offer in support will be put to good use. We have some fun plans for ensuring your choice is respected, and donations help them happen.
We will still be here. The Government know we will still be here, and know we will do what we say we will do. We work to ensure that your medical records are only used in a way which is consensual, safe, and transparent.
We wish you and your loved ones a Merry Christmas, and we’ll have more in the New Year. The next newsletter will have better news than this one. We hope.
Best wishes, for a Merry Christmas, and a consensual, safe, and transparent New Year.
From Phil, Sam, and all at MedConfidential.