Private health firms could be given access to anonymous NHS patient records & data

[mertle]

Originally Posted by Chris

Ah, but allow *what* to happen, exactly? Most of the speculation in this thread has been about the prospect of lawyers junk-mailing sick people on the basis of data bought from the NHS. Something that simply was not part of the announcement made by the Coalition.

It's not surprising of course, the thread was started by a member of this forum who seems to spend rather a lot of time scouring the internet for stories that back up his prejudices (or, if read with eyes half shut, could be made to back up his prejudices), which really rather got it off on the wrong footing.

Personel attacks uncalled for all I am concerned why this even needed. I posted it for people to see to make there own minds up. Just because people got similar views of concerns too, so what its there opinion I did not influence theres.

Thats what forum is for is it not. Naturally not everyone agree with views. Fine you dont agree with views but personal attacks is lowest lows.

I have not gone out to attack you. Why should I let things go.

I have in the past consented the industry went through PROPER channels to require the DATA and the people for subjects to test there product.

I was invited after GP contacted me infact maybe doing more trials yet doc not sure though whether to put me forward for this. Lot of sacrifices as would have to go away for awhile to this clinic. Test could be 6 months to 12 months its big commitment.

Infact I was test subject for few years on various trial treatments. Most failed horridly but latest works and became major player in the easing of sufferers.

Even Ravenheart showed there is already system in place for these companies. Dont think wise to drop protection doubt this will even quicken anything up.

You cant cut corners in testing its too dangerous it takes years to test in labs on animals before human tests. The human trials takes long time too any shortcutting would be very dangerous.

There is tests which get refused too risky or for reason like not been tested enough would they get go aheads without the protection. Lets not forget those students who died trialing a drug. Drop those safeguards we could be in unknown world.

For the system to work they need the correct data but they need the patients too for there trials. If its anomynous how would they contact the GP/specialist to ask for that person in human trials.

There flaws in the whole idea some little nasty unknowns.

Some will accept with question governments are afterall angelic in there policies never have stinging tails.

Another why need that postcode why do they need them if its demagraphics then simply Mr Smith from nottingham should be enough.

Postcodes could be way to find you for sure in some places it might not in others it would lead you right to your doorstep.

With using 192.com you could find the individual when knowing AGE. You could match the person.

As not selling details afterwards I had phone from medical company who was selling products for my illness. Everyone I talked to denied selling as they complied with my none third party request. I could only conclude it was boots or the trials company. I was anoyed that someone breached there remit.

Originally Posted by mertle

Even Ravenheart showed there is already system in place for these companies. Dont think wise to drop protection doubt this will even quicken anything up.

They aren't going to drop protection

You cant cut corners in testing its too dangerous it takes years to test in labs on animals before human tests. The human trials takes long time too any shortcutting would be very dangerous

what corners are going to be cut ?

There is tests which get refused too risky or for reason like not been tested enough would they get go aheads without the protection. Lets not forget those students who died trialing a drug. Drop those safeguards we could be in unknown world.

bloody hell, talk about going off at a tangent that has absolutely no connection to thread whatsoever

For the system to work they need the correct data but they need the patients too for there trials. If its anomynous how would they contact the GP/specialist to ask for that person in human trials.

you have totally failed to grasp what is being proposed .All that is being proposed is that life science companies can access test results and results of treatment when a particular drug has been used they don't need to know the person they don't need to even see them

Another why need that postcode why do they need them if its demagraphics then simply Mr Smith from nottingham should be enough.

NO ,NO ,NO ,It wont be Mr smith from Nottingham they don't need that information it will be patient A from NG (NG being the post code for Nottingham) and postcodes are a way of showing demographics

Postcodes could be way to find you for sure in some places it might not in others it would lead you right to your doorstep.

In very rare circumstances ,i.e the house of commons or a farm in the middle of nowhere where there are only 2-3 buildings within that postcode .Anyway all the postcode info and who lives there is already available and commonly sold by your local authority to marketing companies ,that's how you get junk mail and marketing calls now

I live in the middle of nowhere and even here there are not unique postcodes for domestic premises. Every building for a mile either side of us shares the same postcode. AFAIK unique postcodes generally are given to individual business premises that receive a lot of mail.

---------- Post added at 19:21 ---------- Previous post was at 19:11 ----------

Originally Posted by mertle

Personel attacks uncalled for all I am concerned why this even needed. I posted it for people to see to make there own minds up. Just because people got similar views of concerns too, so what its there opinion I did not influence theres..

No personal attack, simply an observation that is very relevant to the batty and at times plain nonsensical direction this thread has taken. In your OP you said ...

Originally Posted by mertle

Absolute disgrace by Cameron if this goes ahead. Talk about patient confidentiality. Cameron going too far now in the quest to try find a pot gold under his bed.

... right after linking to a story that made very clear indeed that there was no information about charges (or 'a pot gold' (sic) as you put it).

You followed it up with this:

Originally Posted by mertle

I have really bad foot injury which needs hospital care It happened from someone standing on me that is on record. So would expect injury claim **** phoning soon then.

... despite the story you originally linked to very clearly being a story about life sciences organisations getting anonymised data to allow them to improve research and bring new drugs to the NHS more quickly, and *not* a story about personal injury lawyers buying access to your data in order to send you junk mail or make unsolicited phone calls.

The fact that you regularly go out of your way on this forum to put the boot into the current government, even when your claims have the slenderest relationship with the actual facts, offers a reasonably good explanation as to why you should behave in this way.

Originally Posted by Chris

I live in the middle of nowhere and even here there are not unique postcodes for domestic premises. Every building for a mile either side of us shares the same postcode. AFAIK unique postcodes generally are given to individual business premises that receive a lot of mail.

A few years ago i followed my satnav to a postcode address in the remote regions of cumbria only to be told on arrival that it was the wrong house and i wanted the one nearly a mile away with the same postcode

anywhoo i found this from the Royal Mail for the tin foil hat brigade

The first one or two letters is the postcode area and it identifies the main Royal Mail sorting office which will process the mail. In this case EC would go to the Mount Pleasant sorting office in London.

The second part is usually just one or two numbers but for some parts of London it can be a number and a letter. This is the postcode district and tells the sorting office which delivery office the mail should go to.

This third part is the sector and is usually just one number. This tells the delivery office which local area or neighbourhood the mail should go to.


The final part of the postcode is the unit code which is always two letters. This identifies a group of up to 80 addresses and tells the delivery office which postal route (or walk) will deliver the item.

Originally Posted by martyh

A few years ago i followed my satnav to a postcode address in the remote regions of cumbria only to be told on arrival that it was the wrong house and i wanted the one nearly a mile away with the same postcode

Yep, we frequently get that here. Although as we know which building the sat navs generally take people to, it's easy for us to give them directions when they phone us up.

[jonbxx]

I work in the Life Sciences sector and know a little about how patient data is handled. Most companies follow the guidelines set up by the US known as HIPAA. These are pretty much the toughest guidelines out there and also the biggest single pharmaceutical market. There are of course regional variations (for example personal data from Belgium cannot leave the EU) but they mostly follow the HIPAA model.

Trust me, the penalties for HIPAA violations are harsh. Violators risk huge fines, emprisonment and potential closure of a countries market. The facility that handles patient data is incredibly secure!

Also, patient data is shared with pharmaceutical companies now with Adverse Drug Reporting and the like.

[Chrysalis]

I would OPT IN as long as its never used for profit, ie any company making money shouldnt get such info.

Been OPT OUT is wrong in my view.

[Peter_]

Originally Posted by Chrysalis

I would OPT IN as long as its never used for profit, ie any company making money shouldnt get such info.

Been OPT OUT is wrong in my view.

It should not be Opted in by default as that is quite wrong as it is my personal data they want and I will opt out at the very first opportunity I get as it is as far as I am concerned illegal as I have not signed any disclaimer.

[mertle]

Originally Posted by Masque

It should not be Opted in by default as that is quite wrong as it is my personal data they want and I will opt out at the very first opportunity I get as it is as far as I am concerned illegal as I have not signed any disclaimer.

seems not ours aparantly property of Secretary of State for Health. this full legal position of NHS records.

Apparantly Circle who doing cambridge hospital cant access the records under the current system rules. Maybe why government changing it. Who fault that they caused the issue allowing private sector in. I suspect that the real reason not the one they championing.

http://www.alexanderharris.co.uk/New...gislation.aspx

Originally Posted by mertle

seems not ours aparantly property of Secretary of State for Health. this full legal position of NHS records.

Apparantly Circle who doing cambridge hospital cant access the records under the current system rules. Maybe why government changing it. Who fault that they caused the issue allowing private sector in. I suspect that the real reason not the one they championing.

http://www.alexanderharris.co.uk/New...gislation.aspx

You appear to be talking out of an inappropriate orifice.

When you turn up at a hospital for the first time (say, at A&E), if you have not previously visited that hospital, they will not have any medical records about you (which was what part of the NHS IT transformation was about, allowing access to a patient's medical history at the time and place of treatment).

I have been treated a private hospital, and they ask your permission to access your medical records in order to treat you appropriately (and understand the implications of your medical history on the current treatment), and liaise with your GP on this. You could, of course, refuse this permission, but I am pretty sure they wouldn't treat you then....

[Ignitionnet]

Originally Posted by mertle

seems not ours aparantly property of Secretary of State for Health. this full legal position of NHS records.

Apparantly Circle who doing cambridge hospital cant access the records under the current system rules. Maybe why government changing it. Who fault that they caused the issue allowing private sector in. I suspect that the real reason not the one they championing.

http://www.alexanderharris.co.uk/New...gislation.aspx

Call me strange but I would speculate that when admitted to a private sector hospital as part of the admissions forms there'll be a section allowing access to medical records.

I have been treated in a private hospital and had to permit access to my NHS records, of course, without them they couldn't appropriately treat me.

Regardless those records and this are not the same thing.

[Stuart]

Originally Posted by Chrysalis

I would OPT IN as long as its never used for profit, ie any company making money shouldnt get such info.

Seems a very narrow minded view. When you bear in mind that any products they develop (and make a profit from, as they are not charities) could save the lives of thousands, if not millions of people.

People seem to think that large companies (and drug companies in particular) are huge, evil entities only too willing to suck the life out of anyone for profit. While I don't think that these guys are paragons of virtue (quite the opposite, in fact), bear in mind that (to paraphrase something I heard somewhere) they are responsible for products that "will save many more people than you or I ever will.".

---------- Post added at 16:31 ---------- Previous post was at 16:26 ----------

Originally Posted by heero_yuy

So they've got your post code and age, even over a few addressess it's childs play to find each individual and target product at them.

Actually wrong (in some cases). The road my friend in has one postcode. It's a mile and a half long and has over 100 houses along it's length. Most of those probably have between 2 and four occupants.. Blocks of flats may have their own postcode, but again, these are only likely to have their own postcode if a lot of people live in the block.

[rogerdraig]

Originally Posted by Julian

I won't be opting out.

Having had to use the NHS extensively in the recent past, I would be happy for my records to be used for research purposes. In fact during my treatment I agreed to students having access to me and my records to do this very thing.

If it helps save one life it's worth it.

If that’s what it was about I would be for it too

but it won’t be it will end up being an insurance night mare as no matter how you anominise the data the data can be de anomynised with the use of other data bases

soon the backers of the various institutions using the data will all be or have links to the insurance industry then because (hypothetical you) had a heart problem future generations of your family will see refused cover or have huge premiums

---------- Post added at 01:44 ---------- Previous post was at 01:40 ----------

Originally Posted by Stuart

Seems a very narrow minded view. When you bear in mind that any products they develop (and make a profit from, as they are not charities) could save the lives of thousands, if not millions of people.

People seem to think that large companies (and drug companies in particular) are huge, evil entities only too willing to suck the life out of anyone for profit. While I don't think that these guys are paragons of virtue (quite the opposite, in fact), bear in mind that (to paraphrase something I heard somewhere) they are responsible for products that "will save many more people than you or I ever will.".

---------- Post added at 16:31 ---------- Previous post was at 16:26 ----------



Actually wrong (in some cases). The road my friend in has one postcode. It's a mile and a half long and has over 100 houses along it's length. Most of those probably have between 2 and four occupants.. Blocks of flats may have their own postcode, but again, these are only likely to have their own postcode if a lot of people live in the block.

give them a post code and a few relavent details of medical history ocupation and familu history ( all needed for the research they are talking about ) wont take them to long to know exactly who you are

[Mick Fisher]

Originally Posted by rogerdraig

If that’s what it was about I would be for it too

but it won’t be it will end up being an insurance night mare as no matter how you anominise the data the data can be de anomynised with the use of other data bases

soon the backers of the various institutions using the data will all be or have links to the insurance industry then because (hypothetical you) had a heart problem future generations of your family will see refused cover or have huge premiums

---------- Post added at 01:44 ---------- Previous post was at 01:40 ----------




give them a post code and a few relavent details of medical history ocupation and familu history ( all needed for the research they are talking about ) wont take them to long to know exactly who you are

That's exactly how I see it.