Fears over new health data sharing programme

Fears over new health data sharing programme

Fears over new health data sharing programme

First published in News
Last updated
York Press: Photograph of the Author by

NOT enough people are aware of a new NHS data sharing programme, a health watchdog has warned.

From April people’s medical histories with their GPs will be shared with researchers and pharmaceutical companies on a database unless they ask to be excluded.

It is argued the mass storage of the data – which will be “anonymised” – will benefit medical science by helping researchers understand causes of disease, outbreaks of infection and see drug side effects.

But Healthwatch York has raised concerns that leaflets being sent to every household, intended to inform people they can opt out, are being mistaken as advertising flyers and thrown away.

Questions have also been raised about which “approved health care organisations” the data may be shared with.

Sian Balsom, manager at Healthwatch York, said the leaflet did not tell people that if they want to opt out they should contact their GP, or make it clear that data can be shared with private companies.

“Although they say any identifiers are removed, there are concerns about how easy it can be with postcode data and some basic health information to identify actual individuals.

“People need to understand there’s a choice. There are people who are very keen on this, it’s not all a negative picture but there’s not enough information about how this will look and how we stop misuse of this.”

The Government’s Health and Social Care Information Centre will collect information from places such as GP practices and hospitals.

All information available to the public will be anonymous. Other data will be “pseudo-anonymised” before being released to “approved organisations” – meaning that it would be difficult but in some cases not impossible to identify the individual. Information that identifies people can only be disclosed with their explicit consent.

An NHS England, North Yorkshire and Humber spokesman said the programme was supported by a nationwide marketing campaign including posters and leaflets to GP surgeries, collaborations with patient and voluntary groups and charities to maximise awareness, and an 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 their wish to opt out of the scheme if they wish, and we would encourage patients to discuss this with their GP practice.”

For details phone 0300 456 3531 or visit www.nhs.uk/caredata

Comments (7)

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11:00am Fri 31 Jan 14

BL2 says...

I have opted out and would seriously advise everyone to look at this.
This site is also helpful.

http://medconfidenti
al.org/how-to-opt-ou
t/
I have opted out and would seriously advise everyone to look at this. This site is also helpful. http://medconfidenti al.org/how-to-opt-ou t/ BL2
  • Score: 4

12:58pm Fri 31 Jan 14

Zetkin says...

BL2 wrote:
I have opted out and would seriously advise everyone to look at this. This site is also helpful. http://medconfidenti al.org/how-to-opt-ou t/
Thank you for posting this; I'll be using it.

I'm yet to receive the information leaflet, so I guess I and the rest of my street would have gone completely uninformed about this, if it were not for Healthwatch raising the issue through the media.

I was aware that the government wanted to share confidential data but wasn't aware you could opt out.

It seems to me that the government not content with privatising the NHS wants to make a marketable commodity of the information it holds about practically every individual in the country.

Sorry Mr Branson, you are not going to get permission to buy & sell the grim details of my visits to my GP.
[quote][p][bold]BL2[/bold] wrote: I have opted out and would seriously advise everyone to look at this. This site is also helpful. http://medconfidenti al.org/how-to-opt-ou t/[/p][/quote]Thank you for posting this; I'll be using it. I'm yet to receive the information leaflet, so I guess I and the rest of my street would have gone completely uninformed about this, if it were not for Healthwatch raising the issue through the media. I was aware that the government wanted to share confidential data but wasn't aware you could opt out. It seems to me that the government not content with privatising the NHS wants to make a marketable commodity of the information it holds about practically every individual in the country. Sorry Mr Branson, you are not going to get permission to buy & sell the grim details of my visits to my GP. Zetkin
  • Score: 3

2:09pm Fri 31 Jan 14

perplexed says...

Interestingly a recent survey indicated that 41% of GP's intend to opt out of the care data scheme. Not exactly a ringing indictment especially when you consider that the director of the scheme admits , patients could be "re-identified" because insurers, pharmaceutical groups and other health sector companies had their own medical data that could be matched against the "pseudonymised" record.

Your date of birth, full postcode, NHS Number and gender rather than your name will be used to link your records in the system. Apparently , once the information has been linked, a new record will be created and available from March . "This new record will not contain information that identifies you". So how many people in the street have the same birthdate?

Patients have been misled about the “confidential” nature of the data extractions, and it is not clear to whom the data may be sold. Is there anything this Government will not sell to their friends in business!
Interestingly a recent survey indicated that 41% of GP's intend to opt out of the care data scheme. Not exactly a ringing indictment especially when you consider that the director of the scheme admits , patients could be "re-identified" because insurers, pharmaceutical groups and other health sector companies had their own medical data that could be matched against the "pseudonymised" record. Your date of birth, full postcode, NHS Number and gender rather than your name will be used to link your records in the system. Apparently , once the information has been linked, a new record will be created and available from March . "This new record will not contain information that identifies you". So how many people in the street have the same birthdate? Patients have been misled about the “confidential” nature of the data extractions, and it is not clear to whom the data may be sold. Is there anything this Government will not sell to their friends in business! perplexed
  • Score: 8

3:34pm Fri 31 Jan 14

E=MC^2 says...

Why should the onus be on me to opt out of this change? Surely the NHS should require consent from me to being opted in.
All other contacts from the NHS require me to opt in, for them to happen, such as requests to attend screening, health checks, etc. That’s probably because those contacts are intended to improve my health, whereas this initiative has the aim of improving profit for the health care industry and big pharma.
Why should the onus be on me to opt out of this change? Surely the NHS should require consent from me to being opted in. All other contacts from the NHS require me to opt in, for them to happen, such as requests to attend screening, health checks, etc. That’s probably because those contacts are intended to improve my health, whereas this initiative has the aim of improving profit for the [US] health care industry and big pharma. E=MC^2
  • Score: 5

4:55pm Fri 31 Jan 14

MouseHouse says...

Printed, filled in and now with the surgery.

Many Thanks.
Printed, filled in and now with the surgery. Many Thanks. MouseHouse
  • Score: 1

6:26pm Fri 31 Jan 14

Digeorge says...

= please do not let researchers research me any more! Box will be ticked including please do not let any more 22q11.2 deletion syndrome 'researchers' come near me as had enough.

Plus at least all the other 'correct' information goes on the complex medical records which there is probably not a box for.

Outbreaks of infection what a joke! Taken 22 years to get to my issues!!!

Consent please.
= please do not let researchers research me any more! Box will be ticked including please do not let any more 22q11.2 deletion syndrome 'researchers' come near me as had enough. Plus at least all the other 'correct' information goes on the complex medical records which there is probably not a box for. Outbreaks of infection what a joke! Taken 22 years to get to my issues!!! Consent please. Digeorge
  • Score: 0

6:27pm Fri 31 Jan 14

Digeorge says...

Plus data sharing is also as good as what the 'data' inputter puts in and what it is required for.

= could be abuse of patient, could be abuse of mental health issues, could be abuse of a lot of things.

On the positive side, I would like in future my information to be 'correct' which it has taken the hospital 3 years to put right!!
Plus data sharing is also as good as what the 'data' inputter puts in and what it is required for. = could be abuse of patient, could be abuse of mental health issues, could be abuse of a lot of things. On the positive side, I would like in future my information to be 'correct' which it has taken the hospital 3 years to put right!! Digeorge
  • Score: 0

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