Opt-out Process Update – December 2016

You have the right to opt out (dissent) from your medical history being used for purposes beyond your direct care. There are many legal routes for you to do this.

Unfortunately, easiest route, which 1.2 million people have taken up, is under threat. We recommend everyone join our newsletter to get updated information as things continue to evolve.

If you have given an opt out form to your GP before, and are interested, our best advice remains to wait until things are clearer. If you haven’t opted out yet but now wish to, the form in step 1 may suffice.

If you are concerned, you can take all 3 steps below at any time.

Process

1. Use our opt out form in the first instance, and give a copy to your GP receptionist. This form goes to your GP.

That should have been all it would take, if the opt out promise from Jeremy Hunt was being kept, and being seen to be kept, but at this time we believe they are not. As such, there are 2 more steps:

Update: 28/12/16: NHS Digital are currently disputing that the following steps are valid. We will have an update in mid-January following additional work.

2. If you do not wish your hospital data sold/released, you may now need to send a letter to the Health and Social Care Information Centre, (also known as NHS Digital), which is part of the Department of Health. Use this template letter for HSCIC and post to the address at the top of that letter.

Additionally, our current best assessment is that this is likely also necessary for complete protection:

3. If you do not wish your data released by Public Health England, (for their various purposes which are non-statutory) you should send them a similar letter. Despite also being part of the Department of Health, PHE’s long term refusal to honour the Secretary of State’s promise to you is causing us deep concern. Use this template for PHE and post to the address at the top of that letter.

Why two similar letters to different bits of the Department of Health when you had already told your GP and your GP has acted on your wishes? Someone should ask Jeremy Hunt that question. It was his offer of an opt out to patients that he has now effectively withdrawn. He can put it back again, and do this properly, simply by saying so.

Does the opt out form in step 1 work? It protects your GP data, and it should protect your hospital data, but there are currently questions over that. You should be able to just use the form in step 1, and you may have already done so..

Steps 2 and 3 are currently believed to be necessary because of hidden changes in definitions by the Department of Health. They can deliver on their promise and make those steps unnecessary.