medConfidential Bulletin , 8th December 2023

[humanbean]

Another bulletin that should be required reading for anyone concerned about who has access to any of their health data held by the NHS in England. I'm not sure if any of this is relevant to Scotland, Wales, or Northern Ireland.

It talks about, among other things, the National Data Opt-Out. I opted out quite a long time ago.

What I wasn't aware of is the GP Data Opt Out, which I think is new, so I'll be dealing with that over the weekend and delivering it to my surgery by hand.

Hello again from medConfidential,

It’s been several weeks since our last newsletter, and a few things have happened:

A Good Thing: OpenSAFELY

The GP data analysis environment which is capable of being consensual, safe and transparent – known as OpenSAFELY – has announced that the NHS will continue support for their analytical environment which does not create any additional copies of the data, and which respects patient choices to opt out of data being used in ways they don’t want it to be.

Things of another kind

You may have received some junk mail (with an NHS logo) from a company called Our Future Health which would like to sell access to your DNA and medical history to allow others to find new medicines. We’ll have more on that in the New Year.

Government spending £480m on Palantir

The Department of Health in England announced they will spend £330m on Palantir software and an extra £150m on ‘improving’ Palantir – so it’ll cost more next time – which has proved a little controversial.

Palantir will get one or more copies of all health data used by the national NHS across England, and the Department of Health in England has also bought the software for your local NHS Integrated Care System (ICS), and may impose it on your hospital. Whether your local hospital or ICS wishes to take up this “offer” from the Department of Health in England is supposedly up to them. Some officials have however said that while using Palantir might not be “mandatory” for other NHS organisations, there are disincentives to spend money on anything else.

This announcement is a start line, not a finish line. Nothing much changes before March 2024.

The National Data Opt Out exists and works as it always has, although it could always be stronger. The Department of Health in England has not published enough details to know whether patients’ objections will be respected, whether and where it believes your objections don’t apply, and/or whether the Department of Health in England will make everyone opt out again. We have a lot more details here.

As things develop, if you wish to protect your and your family’s medical information, you will likely need to have both an (online) National Data Opt Out and a GP Data Opt out, as your GP data could be used locally in Palantir.

As lawyers continue to pore over the text, if the Department of Health in England does disclose that it has created a new opt out that you have to apply for, we will tell you. (Normally we suggest people join our mailing list to find out new information like this, but you’re reading this on our mailing list.)

Remember, the announcement of the winner of the contract is the start line for this national data programme. It has to get to March 2024 without collapsing, and there are plenty of precedents for such programmes not managing that.

What you can do

The National Data Opt Out does what it always has. We agree with the Department of Health in England that it could be better – they could do something about that, but they refuse to.

The Department of Health in England currently only links to the National Data Opt Out, once again neglecting to point out that the GP Data Opt Out exists and works to block secondary uses of your GP data that may be copied into Palantir if it is not applied to your GP record.

Meanwhile, Palantir shareholders want twitter warnings on anything that suggests the opt out works...

Seasons’ greetings

This is probably our last newsletter before the New Year. We wish you well for the festive season with your loved ones. If you are feeling inclined, medConfidential is always grateful for your support of any kind, and we are grateful that so many of you are on our mailing list. As ever, please do pass this Bulletin on to anyone to whom you think it may be relevant.

Warm wishes,

Phil Booth & Sam Smith

8th December 2023

[e-mail]

[JGBH]

Anything to do with Palantir is never good news! Patients will have less and less rights… as it is becoming more difficult and time consuming plus overwhelming to keep on top of everything. Thank you for your email.

[Bearo]

I remember having the option to opt out a couple of years back - I wavered, then didn’t opt out. Now I want to - is there a particular way of opting out of both National and GP data sharing? Just put it in writing? Or is there a special form? I assume just mentioning it to the receptionist won’t be enough

[TiggerMe in reply to Bearo]

I've just done something via Systmonline if you have that?

[humanbean in reply to TiggerMe]

I just have Patient Access.

[humanbean in reply to Bearo]

Instructions for the National opt-out and the GP opt-out can be found here :

medconfidential.org/how-to-...

[TiggerMe in reply to humanbean]

Done, thanks again HB 🤗

[TiggerMe in reply to TiggerMe]

Bump this up to the top of the Sunday morning to-do list

[TiggerMe]

Thanks HB, I have just adjusted my setting via Systmonline from all and sundry (Surgery Default) to All Organisations Require Verification 🤗

Not sure its the same thing but a start...

[TiggerMe in reply to TiggerMe]

Systmonline page under Manage Sharing Rules

[humanbean in reply to TiggerMe]

I use Patient Access and there is no references I can find to any opt-out from anywhere.

I'll have to do it the way medConfidential describes.