Your medical secrets...

[SpuffMonkey]

Call me an old fuddy duddy (or a bonkers revolutionary - see thread on Royal Family), but I'm not so keen on the imminent scheme to centrally collect all our medical records and "monetize" them by selling them off to whoever fancies them (in particular to the insurance industry, which with the way the NHS is being privatised in pieces, I guess will be a big player in providing healthcare soon) - irregardless of assurances of privacy, it seems quite clear from reading around that the records can be de-aggregated fairly promptly and your details retrieved.

 

If you don't want this to happen to your data - you need to act now, as you cannot change your mind after the event.

 

This site provides some details and a ready made letter to print off and send to your GP

 

medConfidential | Keep my secrets

[AMLinington]

Irregardless isn't a word btw. Just FYI.

 

Having been subject to a referral to a privately run hospital (Care24) via the NHS and having received better care and treatment from them, in principle I have no problem with the NHS sharing my medical details for these purposes. When you take out life insurance policies they ask for everything anyway and having a mortgage without a life insurance policy is probably not wise unless you're rolling in it. So your medical details are already floating about in the insurance world anyway. I don't see a problem with having a central database - at least I know it is all correct rather than 2 or 3 different 'versions' of data out there that may or may not be accurate or up to date. I think selling the details are wrong if it is for promotional purposes but for the purposes of administrating care across providers I can't see an issue.

Edited January 29, 2014 by AMLinington

[witch]

I certainly dont want them sold but having them in the same place would be great - I am sick and tired of going to the doctor after a hospital visit, or vice versa and have them ask ME what was done and why. I'm not a doctor!

[Theblacksheep]

insurance, pharma, privately run data collection companies, google....

 

If they limited it for something that is useful, but its just going to be abused, hacked and be available to literally everyone.

[AMLinington]

insurance, pharma, privately run data collection companies, google....

 

If they limited it for something that is useful, but its just going to be abused, hacked and be available to literally everyone.

 

With enough effort it already is...

@witch brings up a valid point - when you go to hospital they should already know your history, allergies, currently prescribed medication but they don't and you end up having to go through it so many times with 3 or 4 different people - I'm sure it would help waiting times you know.

[SovietRussia]

Didn't this project stop after spending like £700 million and having nothing to show for it, or am I thinking about Universal Credit IT System

[Theblacksheep]

With enough effort it already is...

 

Now no effort, just money.

[Soulfish]

Interestingly my fiance works for the NHS as a business intelligence and SQL developer and deals with the NHS IT systems and centralised databases day-in day-out, as well as all the requests to send data to third parties.

 

She lets me know whenever they make a new attempt to centralise everyones data and makes sure we both opt out as having seen the state of the systems and how they're used there's no way she wants any of our data in them

[SpuffMonkey]

Irregardless isn't a word btw. Just FYI.

 

 

I think it is irregardless: definition of irregardless in Oxford dictionary (British & World English)

[SpuffMonkey]

I certainly dont want them sold but having them in the same place would be great - I am sick and tired of going to the doctor after a hospital visit, or vice versa and have them ask ME what was done and why. I'm not a doctor!

 

If that was what it was for - I'd have less of a problem with it - however - its not about improving your care in hospital or at the docs - its about earning a buck from your private details - personally, at the moment - there are no data on my record that are embarrassing or pose a threat to my personal or private life - but that might not be the case in the future - a "social" disease or a bout of mental instability might make things difficult in some arenas, and once you're "in" this system, there is no opt out, whereas if you're out at the start, you can always opt back in if you think the benefits outweigh the costs.

[AMLinington]

I think it is irregardless: definition of irregardless in Oxford dictionary (British & World English)

 

Irregardless - Wikipedia, the free encyclopedia

 

It is not a 'proper' word per se. Am surprised at the Oxford English Dictionary even listing it as it is usually referred to as a colloquialism or nonstandard.

 

Irregardless means the same as regardless, but the negative prefix ir- merely duplicates the suffix -less, and is unnecessary. The word dates back to the 19th century, but is regarded as incorrect in standard English.

 

So I stand corrected. It IS a word, just not a 'proper' one.

[matt40k]

It is not a 'proper' word per se. Am surprised at the Oxford English Dictionary even listing it as it is usually referred to as a colloquialism or nonstandard.

 

The same folks who have added "Google" as a word.

[pcstru]

I would like another option - to allow use of my data under an Open Source licence which would mandate that anything developed from that data be released under the same licence.

[GeekyPete]

I Don't mind having my details centralised so that it would benefit me in a medical emergency, while away from home say. But to sell on even de-personalised information I object to in the strongest terms. It is a trust issue. I don't trust the kinds of organisations who would buy this data. Plus once this information is out there then it will form the basis of the financial model to Privatise healthcare in the UK.

[GeekyPete]

I would like another option - to allow use of my data under an Open Source licence which would mandate that anything developed from that data be released under the same licence.

 

Genius! I like this approach.

[laserblazer]

The same folks who have added "Google" as a word.

No different to having hoover as a verb. It's a simple word that effectively describes the task.

[tmcd35]

Am I missing something?

 

Read the linked site and it just talks about information being shared with institutions I already assumed it would be shared with - hospitals, clinics, etc. No mention of selling data to the highest bidder. Besides wouldn't the data protection act apply?

 

Of course i don't want my personal data actioned off to $someinsurancescumbagdotcom but the scheme, as I just read it, I don't have a problem with.

 

Besides - My medical notes would fit as MS Word document on a single sided 8" floppy. I'm sure if I ever needed an appointment with my GP I'd have arguements with the receptionist as to whether or not I'm registered at that clinic.

 

Been to my current GP exactly twice. Once in 2001 to hand in the registration forms. Once in 2005 for some jabs for a holiday.

[Ketlane]

I think we have a perceptions issue here. For research purposes, being able to link medical histories and treatments of very large datasets should enable a lot to be discovered that isn't already known. The promise of anonymity of the data - assuming it can be kept technically - would mean that the value of the data is not lost.

[hawc]

I think it is a good idea if it was just kept within the NHS. I had a family member come down from Bristol at Christmas 2012, and he ended up having to be admitted to hospital. Sadly, he passed away just a few days before Christmas 2012. There was so much hassle, and so many phone calls had to be made to Bristol so that they could get his records.

[Arthur]

Full NHS hospital records uploaded to Google servers, "infinitely worse" story to come « Boing Boing

 

PA Consulting, a management consulting firm, obtained the entire English and Welsh hospital episode statistics database and uploaded it to Google's Bigquery service. The stats filled 27 DVDs and took "a couple of weeks" to transfer to Google's service, which is hosted in non-EU data centres. This is spectacularly illegal. The NHS dataset includes each patient's NHS number, post code, address, date of birth and gender, as well as all their inpatient, outpatient and emergency hospital records. Google's Bigquery service allows for full data-set sharing with one click.

 

The news of the breach comes after the collapse of a scheme under which the NHS would sell patient records to pharma companies, insurers and others (there was no easy way to opt out of the scheme, until members of the public created the independent Fax Your GP service).

 

According to researcher and epidemiologist Ben Goldacre, this story is just the beginning: there's an "infinitely worse" story that is coming shortly.