Not to want the NHS to share my confidential medical records?

[SusanC5]

I'm unhappy that any medical information that I share with my GP will be shared as from April this year I believe. My postcode and my NHS number could be released to "approved researchers".

I do not trust the NHS with my personal and confidential information.

AIBU?

NHS organisations responsible for planning purchasing and quality assuring patient care can't even access patient identifiable information, even for the purpose of your own gp learning how they could have managed your care better.

Any information which leaves the nhs certainly won't be traceable back to an individual.

The healthcare system needs information about patient care and outcomes to be able to improve care. This includes research and the development of pharmaceutical treatments.

Some posters here seem to be of the "well, Ive got nothing to hide" school of thought. But just because you have nothing to hide doesn't mean you shouldn't be entitled to privacy. If you write a letter to someone do you send them a postcard or put it in an envelope? Why I'd you have nothing to hide should you care if the postal workers read it/share it.

The data is NOT being adequately anonymised. Anyone with a large database will easily be able to match the two. Diabetic or a controlled epileptic? I'd bet your car insurance premiums will increase. Trying to buy life insurance? I'll bet they'll check you and your families health records first. The data also seems to be being made to pretty much anyone who can stump up the cash. Where is the independent transparent ethics committee deciding whether the proposed user is legitimate.

I sometimes think people are blissfully unaware of all the data that is stores about them. And once all these massive databases start being joined up - well yes, it can be used for the greater good. But these days data is money, and big companies will be using your data for their own ends, often in ways that will end up making us poorer.

If this really doesn't bother you, then fine, but please take the time to think about the issue properly.

lljkk Thu 30-Jan-14 18:47:35
...wait, when you join MN you're supposed to enter truthful details like your name, family member's birthdays etc

Suppose to... not legally binding mind. Who are MN to know if you are telling the truth?! Not an issue, unless you behave like a twat tbh.
Ditto Facebook. Who think I'm male and in my 60s.

The data is NOT being adequately anonymised. Anyone with a large database will easily be able to match the two

Having worked in data systems, I know this to be very true - which raises a worry as to why those who claim to understand NHS issues are saying that it can't be done

Sorry, but there have been far too many cases of personal data being used improperly to let this one go

What... you think patients don't also lie to health service about aspects of their lives?

I think MN can revoke our membership if we give false info about some things; it's one of the conditions of registration. I imagine FB has something similar.

I've spoken to British people who insist they aren't registered with any GP. May not be that unusual.

Lying on FB doesn't have the potential to endanger my life. I'm not sure FB are too arsed, if you aren't causing problems. Its still advertising revenue for them at the end of the day....

yanbu thank you for high lighting this. I shall be opting out!

Otis and lljkk you are missing the point whatever the care.data say will or will not happen with your data will change and evolve as the years go by and technology and the law changes.

Take a case in point the old NHS spine, one of the things they tried to 'sell' to us was the opportunity of seeing your medical records by way of Healthspace, now those in the know were very much aware that NO-ONE was going to be able to access all their medical records, the DPA access to medical records with the following exemptions would still be in place for instance likely to cause serious physical or mental harm to the patient or another person; or relates to a third party who has not given consent for disclosure (where that third party is not a health professional who has cared for the patient.

And NO-ONE was going to be able to get into their records and amend them, that was always going to be managed by the health profession and there was never going to be a guarantee that your records would be updated or amended just because you ask, but so many people believed at the time they could just go in and see all their records which is why they could see no reason for opting out.

Yet on 14th December 2012 HS was canceled as it was unworkable, now we know the tories cancelled the whole NHS spine anyway, but what if they hadn't how many 1000s of people would have thrown away their chance to opt out only to have the reason why they wanted to be opted in cancelled a few years later.

Even now the governments promise to let people see their records on line by 2015 has been scuppered

www.pulsetoday.co.uk/your-practice/practice-topics/it/patient-access-to-online-records-to-be-restricted-to-prospective-information-says-minister/20005694.article#.UuqpKCikJ55

So sorry I have opted out of all the NHS schemes. SCR, local one (Vision 260) and care.data

itsallgoingtobefine well said, completely agree, Its greedy companies that will benefit and the rest of us who will have to fork out.

do under 16s have to opt out them selves , when my dd had a chest xray at 14 they would not give me the results they said over 14 yr old had to give permission to let a parent know any thing now .

Your data will not be sold to insurance companies. That is scaremongering.
In any event if you apply for say life insurance you have a duty of disclosure anyway.
In any event information is released from hospitals anyway for data collection and has been for years.

Entlightenedowl _ YET
and actually you have the right to see any reports given to employers and
insurance agencies
Access to Medical Reports Act (1988)

The Access to Medical Reports Act (1988) states that patients should be offered a copy of their medical report and the opportunity to review it prior to submission to an organisation that has requested it, eg, their employer or insurance company.

Under the Act, if a patient expresses a wish to see a report before it is submitted, they must arrange to do this within a 21-day period. You should keep any report for at least six months and patients have the right to see the report during this period.

The GMC extends this guidance to other sorts of reports, such as government departments or agencies assessing clients for welfare benefits. In Supplementary Guidance – Confidentiality: Disclosing Information for Insurance, Employment and Similar Purposes, the GMC advises that you should offer to show your patient, or give them a copy of, any report you write about them for employment or insurance purposes before it is sent, unless:

The patient has already said they do not wish to see it
Disclosure would be likely to cause serious harm to the patient or anyone else
Disclosure would reveal information about another person who does not consent.

Now Insurance companies and employers would rather we didn't have that power and therefore ANY data that can be shared without our knowledge and consent would be very useful to them.

And it may be that information is already released but not on such a large scale and with so many people.

if the data already collected was fit for purpose and is sufficient for the needs of researchers then there would be no need for this new large and bloody scary data base

I know you can see reports , but thank you.

I have opted out. My medical information may be dull, dull, dull, but it's still my personal information.

In future, I will be rather guarded with any information that I share with my GP. I am no longer confident that any conversations that we have will remain private. I feel sad that the patient/doctor confidentially has gone.

I suspect that the "data grab" will be sold to any organisation that is willing to pay the price.

I have to say I'm with penguin dancer on this, I really don't get the uproar but admit I may end up regretting it.. It's just not something I have the energy to worry about at the moment and believe me I have a chequered medical history!!
I must correct an earlier post though, the Tories may have made noises about the national prog for IT - but the Spine is very much still being used, in fact Spine 2 is on it's way later this year. All that's happened is the name changed, no reference to the national programme but most/all the technology is very much in place and in use (apart from health space, you're right there that one was cancelled).

EnlightenedOwl

Found this link care-data.info/
written by a GP

and now tell me thats its scaremongering

Will I be informed when my personal confidential data is released to an organisation under Section 251 ?

NO.

Can I select or approve the particular organisations that my personal confidential data is released to under Section 251 ?

NO.

You cannot select who the HSCIC disseminates your care.data information to under section 251.

Any organisation - a government department, university researcher, pharmaceutical company or insurance company - can apply to the HSCIC for access to your identifiable care.data under Section 251 (although their application may not be successful of course).

The HSCIC believes that "it would be wrong to exclude private companies simply on ideological grounds" from applying to have access to your care.data record.

The HSCIC would determine whether the reasons for any organisation wanting the data were acceptable, stating that they should be "to improve NHS patient care".

Organisations that have been previously granted access to sensitive identifiable health data held by the HSCIC include the Cabinet Office, Dr Foster and BUPA.

Can I insist that that my personal confidential data is not released to insurance companies under Section 251 ?

NO.

You cannot select who the HSCIC disseminates your care.data information to under section 251.

AND

Insurance companies

The HSCIC also says that identifiable (Red) data will be available to insurance companies - as long as those companies promise that they will not use it "for the purposes of selling or administering any kind of insurance", and as long as their reason for wanting the data was "to improve NHS patient care".

In addition, anonymised and pseudonymised (Green and Amber) data should be given to insurance companies as:

they "can make good use of the data", and it will

"enable insurance companies to accurately calculate actuarial risk so as to offer fair premiums to its customers"

Hey - I'm new waves(I've got three under seven), but I've been researching in all my 'spare' time, round the clock on care.data for 5 months now.

Will you please support a campaign to find out more: www.mumsnet.com/Talk/mumsnet_campaigns/1983765-Who-will-own-our-Health-data-in-a-future-NHS ?

NEW GP FAQs: www.england.nhs.uk/wp-content/uploads/2014/01/cd-gp-faqs.pdf

Patient door drop flyer tells you less: www.nhs.uk/NHSEngland/thenhs/records/healthrecords/Documents/NHS_Door_drop_26-11-13.pdf

Facts:

1. Data is not anonymised but identifiable from GP to central Health and Social Care Centre. Includes unique NHS number, DOB, postcode and gender. And is matched with more data on arrival.
2. You can ask to have those 4 things removed before the rest of your data is extracted from the GP practice (Nu90). But HSCIC merges your data when it lands with their existing data about you from hospital, mental health, Child and Maternity data and so on. So the data is more complete and identifiable at HSCIC anyway, but in theory a more secure transfer.
3. You can ask that no identifiable data should leave the HSCIC system (Nu94).That is objection to "red data" leaving the HSCIC. But it will still flow if the Secretary of State for Health gives permission.
4. Compulsory use of 'amber' data even if you use the two codes. Not stated anywhere in communications. Even if we ask for records not to be shared. That is data which might be re-dentifiable, but is not 100% identifiable to start with (ie Red data). We don't know if pseudonymised data will always be the same, or if it can change which parts are clear and which are 'scrambled' depending on who asks for it.
5. Not yet approved for Research. Whilst I am in favour of sharing properly anonymised data in research, IMO it should not be compulsory and definitely not in he semi-identifiable ways it is offered now.
6. Not for clinical care This data is secondary uses only. www.hscic.gov.uk/sus All commissioning, payments, planning & controls -not used by staff to treat us on the front line.
7. Local IT projects are still being scrapped at huge wastes of ££ The Department of Health claims that they want paperless NHS by 2018. But if clinical technology supporting patients to gain access to their own Electronic Records were of importance why do they let hospitals spend a fortune in money & time on an IT system which they do not take finish? (Ref: www.ehi.co.uk/news/ehi/9089/royal-berks-suspends-cerner-contracts) 9th December 2013 - Royal Berkshire NHS Foundation Trust has suspended contracts of over £6.5m that it holds with Cerner for support of its Millennium electronic patient record system. And Royal Berkshire's story is not the only one.
8. Summary Care Records (SCR) is the other project which allows us to view our own records. that is being sidelined. Care.data is NOT delivering data for us to view. It is for top-down 'managing' use only. Hospitals don't have the hardware. Reported in PulseToday in January 2012, that the GPC Lead privately thought that they should pull the plug on SCRs, "because only a small proportion of records are being accessed and the current utilisation rate means each viewing to date has effectively cost an estimated £1,200.”

I am pro-technology. I am pro choice for electronic records. I see a far greater need to get clinical electronic records right for hospital discharges to GPs. I want a choice (not obligation) to access my own SCR. Why not do those things first, so data quality and accuracy are good before entering into worldwide sharing and offering unaudited data to researchers? In the words of any big data project: 'garbage in, garbage out'.

See care.data in context: UK just signed MOU with US: Ref: www.healthit.gov/sites/default/files/hhsnhs_mou_final_jan_21.pdf. "…open data initiatives, advancing Health IT adoption, and priming their respective markets for innovative new Health IT products and services."

My personal opinion, this is not a lot about care, and more about changing how care is delivered in a private market. That means our data being shared more and more widely. I want to find out more and I need your help. Please support me: Jeremy Hunt and the HSCIC leadership team have signed this agreement with NO press no news and no information what it means for our children's health records and the NHS health provision. I've lived in the US - believe me - unless you are wealthy, it's not the healthcare market we want over here. Public provision including private markets do not exclude the choice of the wealthy to go private. But heavily private markets do exclude good public healthcare. Let's find out more - before it's too late. www.mumsnet.com/Talk/mumsnet_campaigns/1983765-Who-will-own-our-Health-data-in-a-future-NHS

I can't see how the proposed data release will revoke the Data Protection Act. It just can't.

I'll be opting out. I don't know enough to trust the data won't be misused or sold on to pharma or other researchers.

What about hospital held data on individuals?

Hmm I come to this as a patient who had an opportunity to join a clinical trial for a new wave of medication for a chronic condition. Part of this was an opt in research aspect where they follow your life progress to see what (if any) long term health implications are.

I opted in and have continued to opt in even though the meds didn't help me and I've returned to more widely used meds. At every appointment my consent to stay in has been reviewed (4 monthly) and the option to opt out has been offered and remove my data.

I think in some instances it can be good to share data - I hope my data will help others in the future and develop better understanding and from that aspect I've been happy to participate.

If there is a solid clinical reason to share I am happy to do this with my consent and understanding on what my data is being used for. If its just general sharing I'm less keen.

But I can understand why some people would be wary. It was something I considered at length before I agreed.

I am a researcher based in a medical school in England. I have been involved in research now for several years that has used data from GP practices from something called the General Practice Research Database. I believe it is now called the Clinical Practice Research Datalink (www.cprd.com - if anyone is interested). In all the years I've worked in this field, and had access to this data, I have never had anything that can identify a patient.

care.data, however, is completely different: despite what is said in the press and despite what they say themselves, this data will not be used for research. The main uses will be for commissioning services.

The work that I have done and the work that is done by other researchers like me has led to improvements in healthcare for people and improved how things work in the NHS.

The section 251 clause is for rare occasions where there is a public need to know something - like a flu pandemic. But even when it is used, generally the individual patients are not identified. Does that make sense?

I fully believe that using data - like we do, is useful for research. But I do not believe in care.data. It does worry me that researcher like me, my team, will be prevented from helping people improve their health, from finding new treatments etc, because people have (rightly) opted out of sharing their data due to this incredibly stupid government scheme.

I got the confirming email that expressly covered my children as well as me

I have a history of serious mental illness. I work in the NHS in the mental health field. I appear on the system we use even though my old MH team never ever used the system - I checked. Anyone in the trust could (however unlikely) search for me and see all my personal details, so I went through a long and complex process to remain anonymised.

I also have 2 very rare genetic conditions. I have spent many years being poked and prodded, peered at by medical students and told how 'interesting' I am. The combo of the 2 makes me super identifiable.

I am not ashamed of my mental health illness from the past nor my conglomerate of current physical health issues, I just want to be as private as possible. I hope that's "valid enough" for people who think my medical records are dull.