England’s NHS plans to share patient records with third parties

[Me2AsWell]

Does anyone have more details on this intent to share all data from the NHS? Will all data shared be anonymized AND Aggregated? It looks quite concerning to me.

ft.com/content/9fee812f-697...

[Shedman]

This article is good, with details at the bottom on how to opt out.. it is a little involved:

bylinetimes.com/2021/05/19/...

My take on it?

There has already been a lot of data sharing with foreign entities, eg. Palantir

This is not benign / harmless stuff.. big data corporations like that rarely are..

If the UK health system (NHS), currently free at the point of use, evolves to become a US style system, with everyone needing to buy health insurance..

1. Things will get very expensive

2. Outcomes will get worse over time

3. If our data leaks in to the possession of insurers, then our premiums will not be good.

The NHS provides fantastic value for money.. even if it resolved the massive staff shortage and gave staff a 5% pay rise, it would still be fantastic value for money .. the world health statistics show this.. it is evidenced.

The NHS delivers good outcomes - not the best in the World, but really very good [would be better if it was fully staffed.. will get worse with loss of staff through Pandemic deaths and Brexit seeing very many EU nationals move to continental Europe]

If this changes to US health insurance approach, the costs go up, the outcomes worsen .. I believe that UK CLLers should all seek to opt out of this data sharing..

Deadline is mid June. Time to act is now.

[G1llHa1n in reply to Shedman]

Please explain how to go about the opt out.

[Shedman in reply to G1llHa1n]

Were you able to read the article? ..to the bottom of the article?

This section has links to various further info..

How to opt out of latest UK medical data share, deadline mid June 2021

[G1llHa1n in reply to Shedman]

Thanks

[809123 in reply to Shedman]

That’s all conjecture, and when did HealthUnlocked become a political sounding board. This stuff should be on Facebook and Twitter. Let’s keep HealthUnlocked about our health.

[Shedman in reply to 809123]

You talked here about workplace private medical insurance (BUPA) and matters related to possible transfer to personal medical insurance.Sorry, but that rather disqualifies you from commenting on the defunding of the NHS upon which service I am completely reliant.

An interesting aspect of the UK’s two-tier health system (private, if you think it wise and can afford it, NHS for everyone else) is that when we have a health crisis needing emergency care, everyone relies upon NHS emergency service.

Conjecture? As a CLL patient I find myself more likely reliant upon rapid access to medical expertise, already I’ve had 2 close calls with mortality.. Things that impact longevity cross my mind.. the delay in my latest dermatology appointment.. and whether this bleeding behind my ear will prove to be another skin cancer.. stressed out GPs not paying suffficient attention to get the examination right..

What will I do for best interaction with a stressed out, short-staffed, NHS for best outcome.. await August appointment, chase Dermatology, or go see GP.. the latter missed my last lesion which was excised in January - big scar across my forehead.

So, of medical staff (nurses, doctors) shortage within NHS - what is the current number? You don’t know? Don’t care? Odd.

By Dec 2019, over 22,000 EU nationals working in the NHS had left.

Recruitment of new EU medical staff is stymied by UK charging them a hefty NHS surcharge and hefty fees for very uncertain application to live and work in UK, such fees for every child too.

COVID19 NHS staff: ~850 deaths, ~50,000 off sick with long covid. Fact.

This impacts all of our health risks.

Well done for having private medical insurance. Long may it protect you from the health risks associated with CLL. Sorry to have used a word that triggered you - it triggers me too.

Sharing of UK medical data with private companies outside of our control, outside of UK control — an irreversible step.. I think this is a topic relevant to this CLL community.

You clearly like to be private — your HU profile gives nothing away..

Let’s leave the word politics out of this — I am talking about UK’s NHS.

It matters very much to me.

It impacts the likelihood of a CLLer enjoying ‘near normal life expectancy’

[Newdawn Administrator in reply to Shedman]

It matters to me too Shedman but let’s not become personally curt with responders despite disliking the message.

Post lockdown, the NHS is in an almighty mess as I know personally and on behalf of my family and others. I was associated with it professionally for over 30 yrs and underfunding, understaffing and any degree of complacency about its immense societal value grieves me massively. However, I’ve resorted to private health care in a self funding capacity out of total desperation. It doesn’t disqualify me from commenting on a service that has kept me alive and by paying for cataract surgery, I know I freed up a place that someone unable to pay could have. I’d had to cancel my NHS cataract op 3 times due to a permanent respiratory infection prior to treatment. At the point I desperately needed the cataract surgery done, we were mid Covid lockdown and the lists were immense. I’m a carer so I need to be able to drive so I chose to use my own hard earned savings to pay for the surgery and in truth it cost me more than our first house! 😳 If it’s seen as undermining the NHS, so be it but they’ll always be choice and for some, private health care is a major part of their employment package.

I agree that sharing of sensitive data is an important issue for us all and it’s hard for these issues not to stray into the political arena. But they shouldn’t because it’s about individual rights and protection regardless of political colour.

Let’s keep the discussion respectful to all views please.

Newdawn

[809123 in reply to Shedman]

Sorry you feel you need to take things to a personal level. I just said let’s keep posts focused to health and not politics.

[Shedman in reply to 809123]

I stated facts of NHS staff shortage and of general trends that very very many recognise are happening.. it is all somewhat indivisible from the health of UK population, and with CLL, that most certainly includes all here from the UK. Let’s avoid the P word. Sorry to make personal asides, but my very life is totally dependent upon a functioning NHS.. it provided me emergency care at deaths door twice in the last 3 years, that followed by CLL treatment and managing associated conditions, including surgery for skin cancer.. and all follow-ups; it is very personal that EU nationals in the UK have not been made welcome to remain as was promised in early 2016, the more so since this pointless hostility results in thousands departing the UK, some of whom we depend upon for skilled medical care.

Here is an item from the Observer/Guardian:

theguardian.com/commentisfree/2021/jun/06/tell-me-how-youll-use-my-medical-data-then-i-might-sign-up

And here, a well-informed letter in comment from a professor of medical informatics, on topic of this data sharing / 23rd June opt out deadline [sorry, it was scrawled upon by someone else]

Letter in guardian from prof of informatics about sale of NHS patient records

[Oleboyredw-uk]

Hmm, is it just me. Article seems to be behind a paywall.

[Shedman in reply to Oleboyredw-uk]

It works for me.. I’m not a subscriber.. Try a different browser?

[Oleboyredw-uk in reply to Shedman]

I'd wondered about that, especially as I use the HU app on iPhone and linked to Safari. Just tried Firefox on Manjaro Linux and same problem. However, now following link supplied by Me2AsWell and seems to be working fine.

[Shedman in reply to Oleboyredw-uk]

I’ve edited the link.. it is still strangely displayed for me, but perhaps it now works.I have also asked support why pasting an HTTPS:// link here does not work. I guess the HTTPS:// is the part not required. Not intuitive to me.

[Oleboyredw-uk in reply to Shedman]

Your edit worked. Looks like (for me) https blocks it somehow.

[Me2AsWell]

To find out more or to register your choice to opt out, please visit nhs.uk/your-nhs-data-matters.

[G1llHa1n]

Turns out:Your choice will only apply to the health and care system in England. This does not apply to health or care services accessed in Scotland, Wales or Northern Ireland.

So far as I know at the moment there is no intention for the devolved administrations to sell this information

[Jm954 Administrator]

Is this link from NHS Digital helpful?

Mythbusting social media posts about the national data opt-out

digital.nhs.uk/services/nat...

Jackie

[stevesmith1964]

It's been happening for years and in my view supports development of future treatments and drugs.

[Newdawn Administrator]

For anyone struggling to access the link, this may help. It’s important stuff!

infosecurity-magazine.com/n...

‘NHS patient data in England will be shared with third parties for research and planning purposes, fueling concerns about privacy and security, it has been reported today.

The Financial Times revealed that NHS Digital, which runs the health service’s IT systems, will create a database containing the medical records of around 55 million patients in England who are registered with a GP clinic. This includes sensitive data on mental and sexual health, criminal records and abuse.

This information will subsequently be made available to academic and commercial third parties involved in research and planning, although no details on the types of organizations that will have access have been provided.

The initiative follows suggestions that the UK’s response to the COVID-19 pandemic was hampered by lack of data sharing and access, including in a report published this year by the House of Commons Science and Technology Committee.

Patients will need to fill in a form and take it to their GP to opt out of the scheme by June 23, otherwise their historical records will become a permanent and irreversible part of the new data set. Any patients who opt out after this date will prevent any future data becoming part of the new system.

The idea for a database of this kind was first set out by UK Health Secretary Matt Hancock in April, and explained in blogs on the NHS website. This emphasized that patients will not be directly identified in the data set.

The plans have received significant criticism from privacy campaigners. The Financial Times cited a letter from Foxglove, a campaign group for digital rights, to the Department of Health and Social Care, questioning the legality of the proposals under current data protection legislation. Rosa Curling, a solicitor at the organization who penned the letter, wrote that “very few members of the public will be aware that the new processing is imminent, directly affecting their personal medical data.”

Cybersecurity experts have also warned that the database will be a tempting target for cyber-criminals. George Papamargaritis, MSS director at Obrela Security Industries, commented: “It is not surprising that the NHS is facing backlash in response to this move. Sharing medical data with third parties is very risky as there is no way to be sure they will have the proper security tools in place to keep the data safe. While it looks like the NHS has plans to anonymize patient data, this is not a 100% guarantee of security protection.”

David Sygula, senior cybersecurity analyst at CybelAngel, said: “This move from the NHS provides some strong benefits from an academic research standpoint. An initiative like this could have been useful in better controlling the magnitude of the pandemic, and all research work that goes with it.

“However, data collection on this scale is creating a new set of risks for individuals, where their Personal Health Information (PHI) is exposed to third-party data breaches. The extent of the unsecured database problem is growing. It's not simply an NHS issue, but the NHS' third, fourth or further removed parties too, and how they will ensure the data is securely handled by all suppliers involved. These security policies and processes absolutely need to be planned well in advance and details shared with both third parties and individuals.

“Several mechanisms must be put in place, starting with the anonymization of data, as data leaks will inevitably happen. Security researchers, attackers, and rogue states have all put in place processes to identify unsecured databases and will rapidly find leaked information. That's the default assumption we should start with. It's about making sure patients are not personally exposed in case of a breach, while setting up the appropriate monitoring tools to look for exposed data among the supply chain.”

NHS England previously tried to store all GP patient information in a central database back in 2013 in a project called Care.data, which was subsequently abandoned in 2016 due to privacy concerns.’

Newdawn

[Me2AsWell in reply to Newdawn]

My problem with this is that, basis the opt out letter, they do not intend to anonymize the data, still less aggregate it. I quote: "If you do not want your personally identifiable patient data to be shared outside of your GP practice for purposes except your own care, you can register an opt-out with your GP practice."

But we all know with the capabilities of AI even basic anonymization will not be enough - the data needs to aggregated as well if we are to protect patients' privacy.

I have absolutely no problem at all with aggregated and anonymized data being used for research. Clearly that is in all our interests. But a lot more thought needs to be given to howto protect privacy ... particularly since it looks like this database will be open to a wide range of third parties and not just research institutions.