To think this is out of order from the NHS!

[VaccineSticker]

www.ft.com/content/9fee812f-6975-49ce-915c-aeb25d3dd748#comments-anchor

“England’s NHS plans to share patient records with third parties
55m patients have until June 23 to opt out of having their health data scraped into a new database”
🙄😤
So they want to sell our data without our consent because we are automatically opted in.
Who are they selling it to and what are they doing with it and why is anyone’s guess.
I’m opting out as soon as I have a minute to sort out the opt out form - I’m angry that I have to waste my time to opt out of something I never opted in and my data is going to be sold to random 3rd party. Regardless whether the data is going to be anonymised, the whole thing is plain wrong.

NHS Privatisation is well and truly here.

@midgedude you're assuming someone's file is sent in bulk with all the data set alongside each other, it depends entirely on what they are selecting and comparing. You're visualising it wrong, if they extract part of the post code data and one or two other factors, that wont identify someone, it is statistical research- they know what they're doing. Knowing that one person from one area has one condition is of no use, they're looking for trends.

Surely it's highly anonymous in line with GDPR law. It's not going to be lines of text saying "mrs smith is fat because she eats too much and won't acknowledge that there is no such thing as being big boned"

The NHS is under enormous pressure to perform every year every department has to save on the previous year spend but still do the same or more. The only way it can continue is to start bringing in income from other sources. Data mining being one source.

The problem is that the NHS is a victim of its own success. Too many people in the Uk to just be paid for by central gov.

I doubt that the big commercial groups will stop at just a couple factors. You don't need that kind of group for the simple stuff

how do you know which factors you require until you have built the models that typically require huge amounts of data ?

I have yet to come across a commercial data processing body that doesn't try to gather everything , either all at once or creeping requests

@midgedude again you're not understanding, the NHS is not sharing people's files, they're sharing data, it's extremely unlikely they are just sharing people's data as a whole, if it's anonymous it's already been separated to the point it isn't identifying. Ie if looking for female smokers, the female smokers statistics are extracted, then in a pool that is too large to unpick, not that all the files of female smokers are sent.

I agree that I don’t think people can visualise it. I’ve seen this in Medi analytics and the data set is huge.

On another hand the way coding works on medical records has benefitted people during the pandemic - by being able to pull codes and cross reference they put millions of people into shielding. Is anyone complaining about that? Anyone who got a shielding letter wished they had opted out?

It’s data mining, this stuff is gold dust.
I don’t have a problem with my data forming part of the set.

I'd love to see the statistics for MN users.
Specifically how many have symptoms of paranoia.

@Daphnise

I used the online opt out (know my NHS number) and it was easy enough- though a bit biased to try and make you consent, and not opt out.

I don’t think you did. There are two opt outs. The data scraping one cannot be done online. See upthread.

I do understand what sharing data means

I have no objection to the nhs and not for profit organisations using it

I do object to it being sold to people to make money from it .

Note there is small print saying that even if you opt out they can still use your data for coronavirus research purposes. Once again an example of the virus being used to abolish freedoms.

They state that if you don’t opt out your data can be shared with pharmaceutical companies.

@matchingsocks

I'd love to see the statistics for MN users. Specifically how many have symptoms of paranoia.

Tbf we already knew that is an ossue🙈

The NHS has incredibly robust information governance in place. Probably the strongest in the world considering the size of the organisation. I know first hand how difficult it can be to access pseudonymised data from the NHS for legitimate, public health purposes. There are (quite rightly) a lot of checks and processes to go through. The NHS email is incredibly secure.

We have to digitise our healthcare and private providers are necessary- they will provide the AI and other technology solutions just as big pharmaceuticals provide therapeutics. It’s not very different and there is nothing to fear- it is not privatisation by the back door. The NHS is creaking under the weight of an ageing population. The only way to keep it going is to increase efficiencies. Without digital solutions I believe the NHS will collapse. The NHS is our biggest workforce and we owe it to them to invest in innovation, it will help improve workforce and patient experience.

I can see why people are concerned because it is scary having your personal medical records potentially at risk. However, I do trust NHS Digital and their contracting with private providers. Whereas I don’t trust the majority of companies that hold my personal data and do fear falling victim to ID theft/ manipulation.

@VaccineSticker

The GP form needs printing out or emailing to the GP, making opting out much harder...

The link to the website is on the printable form you linked, it’s the same opt out.

NHS your data matters

I know quite a bit about this.
I can’t say much other than to recommend anyone with sensitive info of their medical file, or just anyone who likes their privacy, opts out.

The NHS has been sharing medical data since 2018 for “research and planning”
They say they don’t ‘sell’ the data, but they are planning to ‘trade’ it with big American based companies.

As another poster said the data is made anonymous, but it’s very easy to put a name and address to the file as it contains so much person info.

Does anyone know how exactly the data is anonymised?

There was a proposal some years ago to sell “anonymised” NHS data but when examined it meant names were removed but the data was still searchable by age, sex and postcode. . Post code data is really important for the kind of research these companies want to do.

In many cases there will not be more than one eg 42 year old, female living in a specific post code area. That means that individuals could be easily identified.

Re concerns about anonymity

We get super output areas not postcodes. If too few people live in an SOA we don’t get the data. We get year of birth not DOB. If there are too few people in an ethnic group, the data is suppressed. If there are too few people working in an industry (ie paper making) the data is suppressed etc etc

You get the idea. Our statistical practice in this country is incredibly robust and the government of the day is not able to ‘direct’ bodies that hold these public datasets and override years of information governance protection. It’s just not going to happen. Take it from the people who access this data as part of their jobs.

Frequently, policy makers are frustrated by data access issues and it can take months of planning to get hold of the anonymous data needed to assess the effectiveness of a policy or service change.

@oystercatcher44 that’s not true. The data will not be released with postcodes. Absolutely no way

As an allied health professional I rely on being able to access patient GP notes to do my job and write an adequate care plan, check diabetic blood sugar results, xrays, swab results etc. If everyone opts out as a result of this I won't be able to look up any of these things and patient care will go down the toilet.
I have only come across two patients who have opted out so far and that has required me writing to the GP for all of the above and receiving the reply letter three weeks later when it's too late as the patient has been admitted to hospital with sepsis.
Its an absolute disaster.

One of the reasons the Pfizer vaccine was the first available, is very effective, and that Israel is so far ahead of all the other developed nations in vaccinating its population, is that the Israeli equivalent of the NHS have robust, detailed, digital health records going back decades, and they shared the anonymised data with Pfizer for the purpose of developing and testing the vaccine.

It's not just commercial. There can be important beneficial outcomes to sharing properly anonymised data.

Unfortunately we in the UK have a piss-poor record when it comes to informational hygiene and security. For that reason alone I would consider opting out. Unless it can be shown that our data will be properly anonymised and held securely.

I opted out of this years ago, and yet when downloading the NHS app in the last couple of weeks found I was opted in. Doesn’t fill me with confidence.

I was a data analyst in the NHS for several years.

The main reasons researchers want postcode is because either they want to know about the deprivation of the area or they want to know if it is remote/rural.

Rather than giving researchers the postcode we add on codes saying how deprived it is (on a scale of 1-10 or 1-5) or how remote/rural it is.

We would never give away full postcode. It’s far too identifying.

Unfortunately we in the UK have a piss-poor record when it comes to informational hygiene and security. For that reason alone I would consider opting out. Unless it can be shown that our data will be properly anonymised and held securely

Which about sums up my stance too.

I dislike the rhetoric that they’ve publicised it too, data security is not a new subject in the UK and how anyone could look at this roll out and think they’ve done a good job providing patients (i.e everyone) with the information to make an informed decision about opting in or out is beyond me.

I’m sure that currently the intentions are very honourable but including terms like ‘commercial’ and ‘third parties’ make it vulnerable to abuse in the future without recourse for the public.

It's disgusting.
This is what you get for continually voting those Tory w#nk#rs in!
Please stop doing it 🙏🙏🙏

It’s anonymised and used to understand health patterns, looking to improve healthcare in the future for our dc and grandchildren. No idea why anyone would be so anti this.

@m0therofdragons because not everyone wants their medical records shared with goodness knows who!