Your Medical Records

Matt Hancock has told the NHS to share your private medical record with NHS Digital. This change is being made within the next few weeks, read a newspaper article by a concerned GP in the iPaper.

You have until 23 June 21 to make a decision about this and decide if you are happy with it, once the data is shared, you have no ability to have it deleted or stop it being used.

Once with NHS Digital, your medical records will then be shared with 3rd parties, about which the Government does not give any clarity and no reassurance about its use in future. Its gone. No longer yours.

Given that we know that many companies are making $billions from our data already without any real consent on our part, and given that we know the US and Chinese Governments take and permanently store every piece of data about you, you may wonder why the Government is making this change relating to your private medical records without making a big noise about it to make you aware.

By making this change as quietly as possible, it will immediately raise suspicions about the real motive behind these changes. Is it for the good of the nations health, or is it really about making money from this data gold mine? Or is if because of incompetence and naïve leadership?

One company that will be able to make $millions from your data and who will have access to your data is this CIA backed gem Palantir.

Sharing Data is Good

The issue is not that its wrong for data to be shared for the good of the NHS or the nations general health, its that the Government needs to follow due process, ensure the public has an informed debate, before moving to change policy, all the while ensuring that safeguards are in place and that private citizens retain ownership and control of their data. At the least, we should be able to have our data deleted from databases should we request it. Even social media companies are forced to offer this option!

These are basic things which are not difficult for any competent democratic Government ruling for the benefit of the people to deliver.

This is a massive data grab, being done at a difficult time when people are distracted by other things, one which means we will have permanently lost control of the most personal aspect of our lives once it has been done.

Obviously the Government PR is saying that this helps the NHS. Who doesn't want to help the NHS? But perhaps the best way to help the NHS is not to undermine confidence in how it holds our data, not to try and slip things past the general public without proper consultation and consent, and not to put in place a system that allows data to be used for profit and shareholders whilst claiming its helping the NHS.

And The Weak, They Must Suffer

Given that we know that the poorer end of society, including black and other minorities have their health negatively affected and suffer poorer medical outcomes, the potential misuse of this data will mean that this end of society will suffer the most, with the wealthiest individuals and largest companies being best placed to exploit this data to increase profits.

Myths, Misinformation or Misdirection?

The warnings about this change are increasing in the press and on social media, including the alarm being sounded by many medical professionals.

Due to this, NHS Digital has come back with a ‘mythbusting’ response to some of the things being shared.

Here are a few:

Social media is saying that you only have until 30 September 2021 to opt out of having your medical records shared.

NHS Digital say that this is untrue, that you can opt out anytime.

There are two separate data shares happening each with its own opt out. One has a strict deadline by which you have to opt out. The other does not. The mythbusting site is talking about the other. This is slight misdirection, but essentially correct information. Even with the other opt out, its also true that you can opt out of future data sharing after the deadline, but, you can never opt out, request to delete, or recover the data that is about to be shared. Once it happens, its there for good.

Social media is making a big noise about your medical records being available to commercially available organisations.

NHS Digital say that this is untrue.

However, the Government has not gone to the effort to:

1. Make it crystal clear that this will never happen.

2. Be clear about who the data will actually be made available to today.

3. Be clear about what safeguards are in place to look after this data once it moves from NHS Direct to commercial organisations.

4. Ensure that we retain control of OUR data and OUR private medical records.

5. Has included in the acceptable list of companies who will get the data some with dubious backgrounds.

What the Government has effectively said in reply is “trust us, it’ll be fine”.

Social media is highlighting the risk of the data not being anonymised. (Its being pseudonymised. Which means that it can be identified as you at any time in the future, legally, illegally, or through a change in rules.)

NHS Digital is silent on this.

NHS Digital describe pseudonymised data like this:

Source: NHS Digital website on 2/6/21

As long as you are happy that there is no such thing as a data breach or misuse of personal data then this all appears fine, to me, even in the above image, it still looks like the personally identifiable woman.

You've Been Told

Given this significant change, and given that the last time the Government tried a similar change there was a public outcry which stopped it happening, you may ask why you have not been informed, well the Government says it has informed you, remember?

So how did they inform you of this highly significant change to your private medical records:

It’s buried deep within the NHS Digital site here: Don’t you read all new pages they put up?

A page was put on the NHS website for your daily search on “is the NHS keeping my data safe” or "NHS GPDPR".

Leaflets have been put in GPs surgery’s from last April (the point at which you were stopped from going to your GP surgery due to Covid). Didn’t you pick one up?

GPs have also been told to inform their patients. This is at the same time that they have been dealing with Covid, the Covid backlog of other medical cases, and setting up vaccine surgeries.

Perhaps Matt Hancock wants this one slipped through without much fuss?

Opting Out

But opting out has been made easy right? Read on.

To opt out of this data sharing you have to take the following steps:

1. Register a Type 1 Opt Out with your GPs surgery before 23 June 2021 (click on the link on the page that says "returning this form" to open a Word document that needs to be completed and given to your GP surgery - easy eh!)

But thats not all! You have to do a 2nd Opt Out covering your hospital records:

2. Visit the NHS website here. Then go through the online opt out. You will need a mobile phone and your NHS Number (which is on vaccine documentation if you have that).

Opting out does not hinder the ability of the Government to deal with national emergencies like Covid, there are already exceptions which override your desire for privacy for the wider public interest sharing your data even if you have opted out.

But opting out now, means that you have taken a step to make the Government realise that the data of its private citizens belongs to the individual, and if used, it should be with their informed consent and remain under their control, rather than being commercialised or even used against them in future.

The Warnings From History

Why is this important? After all, none of us has anything to hide right? Thats true, I guess. But its Pride month this month, so lets just have a think about how small pieces of personal information can be used against you.

Its not so long ago that even in this country you could go to prison for information about what you do in private, in some countries your sexuality still carries the death penalty. If this data share is breached by foreign Governments, who knows what they may do if you cross their borders.

Its within my grandparents memory that information about your religious beliefs could have you put in a British concentration camp in British Palestine, your medical records are intensely personal, who knows what feature about you might, in future, be subject to oppression.

Releasing your most private information seems to me to be a step in the wrong direction And open to abuse unless done correctly (giving the individual the power to delete or edit it).

And once your medical records are available, who knows what the future will hold. Perhaps an algorithm will be allowed to combine your global movements with your health record and identify you as someone likely to collect dangerous viruses and imprisoned. Perhaps this will increase your insurance premium. Trivial. But who knows, perhaps it means you will not be allowed to have children, or you will be denied education because your life expectancy means you are a bad investment, perhaps your genetic code will be deemed to be undesirable and you will have to live in inhospitable parts of the world reserved for the undesirables like you.

Remember that what the Americans and French call ‘liberty’ in days gone by, we call privacy today. So this is not a minor issue, our privacy is the foundation of a free country and its being eroded.

Even though the horse has bolted when it comes to our data, there is still no harm in trying to bolt the stable door to send a message that we are prepared to act to reclaim our data, and in doing so, reclaim our liberty.

Sleep tight.