Bradford Telegraph and ArgusPatients' fears over data share system (From Bradford Telegraph and Argus)

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Patients' fears over data share system

Bradford Telegraph and Argus: Geoff Shores with one of the information leaflets Geoff Shores with one of the information leaflets

Patients are “largely in the dark” about plans to share their personal medical records, according to a health consumer group in Bradford.

NHS England is to bring together the population’s personal data in a bid to improve research into the outcome of treatments.

Using people’s NHS numbers, dates of birth, gender and postcodes, information kept by GPs, hospitals and community services, will be linked and made available to other organisations.

The public body said the information, held in a secure system managed by the Health and Social Care Information Centre, will be anonymised before it is made available to approved researchers and those planning NHS services.

But there are concerns that the scheme has not been properly explained and that people may not realise that if they want to opt out they have to do so at their GPs before March.

Healthwatch Bradford and District’s Victoria Simmons said: “Despite a nationwide mail-out campaign, people are still largely in the dark about plans to share their personal medical records.

“Although the leaflets about the NHS care data programme have been delivered to homes across the district, we feel that people don’t know enough about NHS England’s plans to make an informed choice. Most people that we have spoken to don’t know anything about it, they may not have noticed the leaflet because it came through their door with lots of other junk mail.”

Almost a quarter of Healthwatch organisations across the country have raised concerns about the clarity and accessibility of a leaflet explaining the scheme posted to all homes in the country.

Healthwatch is urging NHS England boss Sir David Nicholson to delay the April 1 deadline and step up efforts to explain the scheme in plain English.

A spokesman for NHS England said: “The leaflet distribution initiative is currently ongoing and residents should receive the leaflet as part of their normal daily postal delivery. The programme is also being supported by a nationwide marketing campaign.

“This includes, for example, a national media publicity initiative, the distribution of posters and leaflets to GP surgeries, as well as collaboration with patient groups, charities and voluntary groups to help maximise awareness of the campaign. There is also an extensive online and social media campaign.

“We are also keen to ensure that patients are able to raise any concerns they may have about the sharing of their information, including opting out of the scheme if they wish.” People can get more information at www.nhs.uk/caredata.”

Geoff Shores and his wife, Kathleen, found out about the care.data scheme not through a leaflet delivered to their house, but through Mr Shores’ involvement in his surgery’s patient committee.
“I don’t ever remember getting a leaflet,” the 70-year-old said.
“The leaflet is very similar to a junk leaflet and I would think most of the population of Bradford, certainly people I have spoken to, won’t remember receiving it.”
Mr Shores said the GPs would have to download data to NHS England’s shared data system, unless patients asked them not to, which he is worried about.
“I bet 99 per cent of the population won’t have a clue about what’s going on,” the retired policeman said.
“They [NHS England] say the information is anonymised, but it gives details of NHS numbers and if somebody starts hacking it, you don’t know where it might end up.
“If you’ve something medical you’ve told your doctor about, this could be going on the data base.”
“It’s a very great worry for me and for the population that your records are going on this database.”
Mr Shores said his medical practice had an opt-out form which patients could complete if they wished.

Comments (9)

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10:13am Sat 8 Feb 14

Joedavid says...

I want the whole of the NHS to be able to immediately see my hospital and GP records should I be taken ill when away on holiday etc. in another part of the UK.
Also I want to be able to read them myself on the internet, recently if I had been able to read them I would have been able to correct an error in my GP treatment of myself.
Of course the system needs to be secure as possible to stop wrong people getting in.
I want the whole of the NHS to be able to immediately see my hospital and GP records should I be taken ill when away on holiday etc. in another part of the UK. Also I want to be able to read them myself on the internet, recently if I had been able to read them I would have been able to correct an error in my GP treatment of myself. Of course the system needs to be secure as possible to stop wrong people getting in. Joedavid
  • Score: 0

10:58am Sat 8 Feb 14

Albion. says...

Joedavid wrote:
I want the whole of the NHS to be able to immediately see my hospital and GP records should I be taken ill when away on holiday etc. in another part of the UK.
Also I want to be able to read them myself on the internet, recently if I had been able to read them I would have been able to correct an error in my GP treatment of myself.
Of course the system needs to be secure as possible to stop wrong people getting in.
I agree, personally I'm not that worried if hackers got access to mine, I can't imagine what use it would be to anyone.
[quote][p][bold]Joedavid[/bold] wrote: I want the whole of the NHS to be able to immediately see my hospital and GP records should I be taken ill when away on holiday etc. in another part of the UK. Also I want to be able to read them myself on the internet, recently if I had been able to read them I would have been able to correct an error in my GP treatment of myself. Of course the system needs to be secure as possible to stop wrong people getting in.[/p][/quote]I agree, personally I'm not that worried if hackers got access to mine, I can't imagine what use it would be to anyone. Albion.
  • Score: 0

11:10am Sat 8 Feb 14

sorrow&anger says...

Albion. wrote:
Joedavid wrote:
I want the whole of the NHS to be able to immediately see my hospital and GP records should I be taken ill when away on holiday etc. in another part of the UK.
Also I want to be able to read them myself on the internet, recently if I had been able to read them I would have been able to correct an error in my GP treatment of myself.
Of course the system needs to be secure as possible to stop wrong people getting in.
I agree, personally I'm not that worried if hackers got access to mine, I can't imagine what use it would be to anyone.
They already tried this and failed. They wasted billions in the process. most of which ended up in the pockets of Tory Party donors.
[quote][p][bold]Albion.[/bold] wrote: [quote][p][bold]Joedavid[/bold] wrote: I want the whole of the NHS to be able to immediately see my hospital and GP records should I be taken ill when away on holiday etc. in another part of the UK. Also I want to be able to read them myself on the internet, recently if I had been able to read them I would have been able to correct an error in my GP treatment of myself. Of course the system needs to be secure as possible to stop wrong people getting in.[/p][/quote]I agree, personally I'm not that worried if hackers got access to mine, I can't imagine what use it would be to anyone.[/p][/quote]They already tried this and failed. They wasted billions in the process. most of which ended up in the pockets of Tory Party donors. sorrow&anger
  • Score: 2

1:54pm Sat 8 Feb 14

allinittogether says...

Albion. wrote:
Joedavid wrote:
I want the whole of the NHS to be able to immediately see my hospital and GP records should I be taken ill when away on holiday etc. in another part of the UK.
Also I want to be able to read them myself on the internet, recently if I had been able to read them I would have been able to correct an error in my GP treatment of myself.
Of course the system needs to be secure as possible to stop wrong people getting in.
I agree, personally I'm not that worried if hackers got access to mine, I can't imagine what use it would be to anyone.
So you're happy that a private organisation say a life insurance company would be able to buy the data, identify you and decline to insure you?
[quote][p][bold]Albion.[/bold] wrote: [quote][p][bold]Joedavid[/bold] wrote: I want the whole of the NHS to be able to immediately see my hospital and GP records should I be taken ill when away on holiday etc. in another part of the UK. Also I want to be able to read them myself on the internet, recently if I had been able to read them I would have been able to correct an error in my GP treatment of myself. Of course the system needs to be secure as possible to stop wrong people getting in.[/p][/quote]I agree, personally I'm not that worried if hackers got access to mine, I can't imagine what use it would be to anyone.[/p][/quote]So you're happy that a private organisation say a life insurance company would be able to buy the data, identify you and decline to insure you? allinittogether
  • Score: 3

1:58pm Sat 8 Feb 14

allinittogether says...

Until there is a categoric assurance of absolute anonymity and that the data is never to be shared with (ie sold to) private organisations then I'll be opting out.
Of course this assurance won't be forthcoming because that exactly what they are going to do.
Until there is a categoric assurance of absolute anonymity and that the data is never to be shared with (ie sold to) private organisations then I'll be opting out. Of course this assurance won't be forthcoming because that exactly what they are going to do. allinittogether
  • Score: 4

2:01pm Sat 8 Feb 14

Joedavid says...

allinittogether wrote:
Albion. wrote:
Joedavid wrote:
I want the whole of the NHS to be able to immediately see my hospital and GP records should I be taken ill when away on holiday etc. in another part of the UK.
Also I want to be able to read them myself on the internet, recently if I had been able to read them I would have been able to correct an error in my GP treatment of myself.
Of course the system needs to be secure as possible to stop wrong people getting in.
I agree, personally I'm not that worried if hackers got access to mine, I can't imagine what use it would be to anyone.
So you're happy that a private organisation say a life insurance company would be able to buy the data, identify you and decline to insure you?
No of course not, but if you will read my post again I said the "whole of the NHS" not everyone.
[quote][p][bold]allinittogether[/bold] wrote: [quote][p][bold]Albion.[/bold] wrote: [quote][p][bold]Joedavid[/bold] wrote: I want the whole of the NHS to be able to immediately see my hospital and GP records should I be taken ill when away on holiday etc. in another part of the UK. Also I want to be able to read them myself on the internet, recently if I had been able to read them I would have been able to correct an error in my GP treatment of myself. Of course the system needs to be secure as possible to stop wrong people getting in.[/p][/quote]I agree, personally I'm not that worried if hackers got access to mine, I can't imagine what use it would be to anyone.[/p][/quote]So you're happy that a private organisation say a life insurance company would be able to buy the data, identify you and decline to insure you?[/p][/quote]No of course not, but if you will read my post again I said the "whole of the NHS" not everyone. Joedavid
  • Score: 1

2:15pm Sat 8 Feb 14

Albion. says...

allinittogether wrote:
Albion. wrote:
Joedavid wrote:
I want the whole of the NHS to be able to immediately see my hospital and GP records should I be taken ill when away on holiday etc. in another part of the UK.
Also I want to be able to read them myself on the internet, recently if I had been able to read them I would have been able to correct an error in my GP treatment of myself.
Of course the system needs to be secure as possible to stop wrong people getting in.
I agree, personally I'm not that worried if hackers got access to mine, I can't imagine what use it would be to anyone.
So you're happy that a private organisation say a life insurance company would be able to buy the data, identify you and decline to insure you?
At my age it makes little difference and I don't need or want insurance.
[quote][p][bold]allinittogether[/bold] wrote: [quote][p][bold]Albion.[/bold] wrote: [quote][p][bold]Joedavid[/bold] wrote: I want the whole of the NHS to be able to immediately see my hospital and GP records should I be taken ill when away on holiday etc. in another part of the UK. Also I want to be able to read them myself on the internet, recently if I had been able to read them I would have been able to correct an error in my GP treatment of myself. Of course the system needs to be secure as possible to stop wrong people getting in.[/p][/quote]I agree, personally I'm not that worried if hackers got access to mine, I can't imagine what use it would be to anyone.[/p][/quote]So you're happy that a private organisation say a life insurance company would be able to buy the data, identify you and decline to insure you?[/p][/quote]At my age it makes little difference and I don't need or want insurance. Albion.
  • Score: -1

3:40pm Sat 8 Feb 14

yezboss says...

The fact that most data which identifies you save for NHS number and postcode will be redacted does not mean you cannot be identified. Currently all you need to do in the evnet of hospitalisation is give the hospital etc the bits missing (If you are able that is) and if not it relies on someone else doing it. I have several hospital numbers though as even the same one has created one on each visit over the years.
However that inforamation should be available (on system one) to hospitals anyway - but it's not because those systems are not all compatible and never will be due to sheer incompetnce of authorities not being consistent, thats why a new reference is created quite often.. So why do they want to have carte blanch (by way of default) authority to have yours. That is so they are able to sell and release it to drugs companies for research and others for marketing purposes, The fact only your postcode and your NHS number will be released will not preclude you being identified by outside agencies if they really want to. It's not rocket science e.g provided the postcode is up to date and it may not be so there is flaw number 1, the fact there is a one leggeed man in PC AB1 1AA street will let someone know who is selling stair lifts or wheel chairs, invalid cariages/mobilty scooters etc where to look. It will not be hard to conclude. Thats flaw number 2. My data will not be released to joe public thank you. AND it is also wrong you HAVE to opt out, the reverse should apply.
The fact that most data which identifies you save for NHS number and postcode will be redacted does not mean you cannot be identified. Currently all you need to do in the evnet of hospitalisation is give the hospital etc the bits missing (If you are able that is) and if not it relies on someone else doing it. I have several hospital numbers though as even the same one has created one on each visit over the years. However that inforamation should be available (on system one) to hospitals anyway - but it's not because those systems are not all compatible and never will be due to sheer incompetnce of authorities not being consistent, thats why a new reference is created quite often.. So why do they want to have carte blanch (by way of default) authority to have yours. That is so they are able to sell and release it to drugs companies for research and others for marketing purposes, The fact only your postcode and your NHS number will be released will not preclude you being identified by outside agencies if they really want to. It's not rocket science e.g provided the postcode is up to date and it may not be so there is flaw number 1, the fact there is a one leggeed man in PC AB1 1AA street will let someone know who is selling stair lifts or wheel chairs, invalid cariages/mobilty scooters etc where to look. It will not be hard to conclude. Thats flaw number 2. My data will not be released to joe public thank you. AND it is also wrong you HAVE to opt out, the reverse should apply. yezboss
  • Score: 1

11:32am Sun 9 Feb 14

MontyLeMar says...

Speaking personally, if the NHS can recoup some of its costs by selling masses of information to the private sector I say go ahead and do it, but make sure you get your money's worth, don't just give it away to Tory Party donors. Like it or not, information makes the economy go round. I don't worry about nuisance phone calls because every call that is either Number Withheld or not in my contacts goes to answer phone anyway. If people start refusing me services because they have found something in my record then that is another thing so I would like to have rights of access to my data so I can launch objections if needed. I would like to have a hard copy of data relating to me which has been given out and a right of appeal.
Speaking personally, if the NHS can recoup some of its costs by selling masses of information to the private sector I say go ahead and do it, but make sure you get your money's worth, don't just give it away to Tory Party donors. Like it or not, information makes the economy go round. I don't worry about nuisance phone calls because every call that is either Number Withheld or not in my contacts goes to answer phone anyway. If people start refusing me services because they have found something in my record then that is another thing so I would like to have rights of access to my data so I can launch objections if needed. I would like to have a hard copy of data relating to me which has been given out and a right of appeal. MontyLeMar
  • Score: -3

Comments are closed on this article.

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