Kitz Forum
Announcements => News Articles => Topic started by: BritBrat on February 10, 2014, 10:04:07 AM
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David Davis MP, a former shadow home secretary, told the Guardian he has established that police will be able to access the health records of patients when investigating serious crimes even if they had opted out of the new database, which will hold the entire population's medical data in a single repository for the first time from May.
theguardian.com (http://www.theguardian.com/society/2014/feb/06/police-backdoor-access-nhs-health-records)
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We had a leaflet pushed through our doors last month about this.
I must admit I was very dubious about the 3rd party information. As I was going into my GPs surgery later that day to pick up a prescription I asked about opting out. Only to be told, they didnt know how to do so. The receptionist called someone else over, but it seemed I could opt out of the whole lot, but the confusion was over the 3rd party stuff.
I dont mind info being shared beween hospitals, ie if I was in a different town and had and accident and had to go into hospital, I dont mind if they can see my records to check medicines etc.
But I really dont like the idea of it being available to 3rd parties.. which usually means somewhere along the line someone will stuff up and information will be made public where it shouldnt be.
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Unfortunately whether we like it or not, opt out or what ever privacy is a thing of the past. The reality is we practicable give away our personal information without thinking about. Everything we do one line is monitored and stored as recent revelations by Mr Snowdon have proven.
Any one using a smart phone, iphone or andriod are tracked unless you read the app agreements carefully to see what they are collecting or tracking. This is just one link from a quick search http://www.newsnet5.com/news/local-news/investigations/is-your-smartphone-spying-on-you-how-tech-companies-track-your-every-move (http://www.newsnet5.com/news/local-news/investigations/is-your-smartphone-spying-on-you-how-tech-companies-track-your-every-move).
The futures bright nope its scary! As the internet moves to IPv6 and the unpronounceable number of IP addresses it allows potentially everything or person now in the future could be given a unique IP address and be tracked. Even if that didn't happen face recognition technology is already being trialed that can pick out an individual from crowds so they track you that way!
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I opted out months ago.
It is not one database you have to opt out of but at least two.
The point of this post was that even if you opted out police still have access !.
But you can trust the polices, yes?
Plebgate, Hillsborough I will let you decide.
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I'll swim against the tide of popular opinion! Because with the experiences of the last 15-20 years, I'd much rather my medical info be available easily when needed.
Anyone is welcome to see what I've got! (Clarification: not Naked Rambler style :scare:).
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That's fine but I would rather wait and see what happens.
Once in you can't get out.
But out you can opt in at any time.
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>> I'd much rather my medical info be available easily when needed.
I have no issue with that, its the 3rd party information.
As mentioned in my post above, from what I can gather when I asked at my GPs, I could have opted out of the other medical places which Im quite happy to leave on records, and its the 3rd party that they werent sure about or how to do it.
Britbrat has mentioned theres several databases, and it seemed it would have been easy for me to opt out of the one where info can be shared with other hospitals and surgeries etc, but it was 'the others' that seemed to cause them difficulties.
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https://www.faxyourgp.com/ (https://www.faxyourgp.com/)
This site was set up yesterday, launched at an Open Rights meeting. It's spun off from the old faxyourMP site. Using it, you can send an automated fax to your GP surgery to opt out of the care.data sharing of your medical records.
Privacy of that site seems good, and has been set up from genuine concern.
Ian
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Giant NHS database rollout delayed. (http://www.bbc.co.uk/news/health-26239532)
The start of a new NHS data-sharing scheme in England involving medical records is being delayed by six months.
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I was at my GP's surgery this afternoon and I asked again about the opt out.
There was still much confusion about how it was done. They showed me the forms I had to fill one in, but it wasnt clear and looked like a load of gobbledygook and I couldnt figure out which was which for the opt out.
They let me fill in the form, and said they are going to attempt to contact someone to find out exactly how they should be processing these forms, which dont seem to tie up with the software.
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https://www.faxyourgp.com/ (https://www.faxyourgp.com/)
This site was set up yesterday, launched at an Open Rights meeting. It's spun off from the old faxyourMP site. Using it, you can send an automated fax to your GP surgery to opt out of the care.data sharing of your medical records.
Privacy of that site seems good, and has been set up from genuine concern.
I have made use of the above service (thanks Ian) and will see what happens. :-\
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Thanks from me too Ian, I had a look, but since I'd already pestered them this afternoon, I thought that sending that through tonight may confuse them further :lol:
I'm glad its being delayed, there seems to be an awful lot of people who dont know about it.. and much confusion from the GP aspect too :(
If its not sorted in another couple of months and they cant get their act together I may just opt out of the whole lot entirely. The confusion and incompetence up to date doesnt bode well for the future and how secure your records are.
I was discussing this matter this afternoon with my daughter as she'd come with me.. and she also was concerned about the 3rd party aspect.
Im totally concerned about the privacy aspect and just who does have access to what. Its like she says, could it give your employer right to access your info, and just who could access it... like theres mention of the police... it only takes one rouge person to be on the take who may have access and sell on your info.
Theres also other aspects to be bourne in mind (not that any apply to me), but what if you have records on their about sexual health aspects, or say an abortion... those things should be kept private, if that information got in the wrong hands it could lead to devastation for some people. We all know what the media is like and how they can sometimes get their hands on stuff they shouldnt.
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The whole thing is of no direct benefit to patients. It will be no use to doctors and hospitals treating you, because the data is anonymised. The only benefit is that which accrues from the data being available to medical researchers. In my opinion the risk (certainty?) of confidential data getting into the wrong hands far outweighs the likely benefits. I will certainly be opting out.
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I agree with Eric, I can see no patient benefit and will opt out. There does seem to be some confusion about whether or not you can opt out completely. See the information here (http://medconfidential.org/how-to-opt-out/) which explains that it is possible that you data could still be used even if you opt out! You can also download a letter template if you dont trust a fax to arrive.
Stuart
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Just to add to the confusion, and yes I went through this months ago.
There are two things you may want to opt-out of.
Summary Care Record (http://www.nhscarerecords.nhs.uk/)
It seems to me that best form of action if this is so valuable to the patient is to have an op-in system, then you know each and every patient has read and understood the options and taken an informed choice.
Do babies from birth get a choice at the moment?
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I thought I heard something about this being postponed -- then found this http://www.politicshome.com/uk/article/93214/david_davis_mp_welcomes_postponement_of_nhs_database_for_6_months.html -
When I was first diagnosed in November 2012 I was asked if I would be willing for my 'health' details to be available to other hospitals associated with the CHU Bordeaux, including the CHU in Toulouse. ( CHU - Centres Hospitaliers Universitaires ) This database is available ONLY within the specified hospitals, of which I was given full details. In the hope that any details might be of use in the development of future treatments and might help someone else, I agreed and signed quite happily - but a database as the one suggested :no: :no: :no:
We are also registered at a local pharmacy (in the next village) so any medications come from there; the pharmaceutics here have their own database, and we hae the choice to use it or not; it is very similar to the Summary Care Record in BB's post .... if at any time we are anywhere in France and have either forgotten to take medication with us, or fall ill, we simply present the local pharmacy there with our Carte Vital (our Health card - looks like a credit card but can't buy shoes with it :D) and voila - they have all the information regarding medication, dosage etc.
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Several years ago I asked if I minded having further tests done and results shared for research purposes and I had no objection in the slightest and readily agrred.
My thoughts were Ive got to go through this anyhow, and if I have to have a few additional tests and the odd extra biopsy which went to the research team along with questionnaires and my medical history then it was for the common good. In fact when the results were published nationwide I actually felt a bit good and thought to myself, yep I was one of those.
But this latest development just seems to be a total blanket to give practically anyone access. Maybe Im too cynical, but I really have no confidence in certain organisations when it comes to security. In my mind the security measures arent good enough. On all but the newest system anyone can look at your data and leave no trace that theyve been snooping. Theres an awful lot of people who will have access, and Im pretty certain that there will be someone somewhere who will succumb to temptation and abuse what trust has been placed in them either for financial or other reasons :(
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Could I be identified?
When I was diagnosed I was 1 of 50 in the world with it, and 3 or 4 in the UK.
Do you think they could find out who I am ?
I have no objection to the idea, but I would want to be able to view and delete what is on my records, it could
be just wrong or it could be I don't want others to know that information.
I don't see why the data from a GP surgery with its post code and not that of the individual would still be good enough for research, why do they need NHS number?
I was in a NHS clinic recently and the Nurses on the station were changing one of their system passwords and asking the other how to do it, they told me the old and new password but only because I was close to the nurses station.
I think I could of got them sacked if I had reported it.
So if you think its secure you are dreaming.
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http://boingboing.net/2014/03/03/full-nhs-hospital-records-uplo.html
They take good care of records so...
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Exactly ! :mad:
After reading this (http://www.theguardian.com/society/2014/mar/03/nhs-england-patient-data-google-servers?CMP=twt_gu) I now even feel like opting out of everything.
he entire NHS hospital patient database for England was handed over to management consultants who uploaded it to Google servers based outside the UK.
Certain gov depts really dont seem to have a clue how to keep data safe. This type of information is classed as sensitive under the DPA, so do we really trust them to do what they are supposed to? Shipping the info abroad on to googles servers isnt what Id call a good move. Perhaps Im being a bit paranoid, but I dont 100% trust google either, they seem to be accumulating a bit too much data these days for my liking.
In this Act “sensitive personal data” means personal data consisting of information as to—
(a)the racial or ethnic origin of the data subject,
(b)his political opinions,
(c)his religious beliefs or other beliefs of a similar nature,
(d)whether he is a member of a trade union (within the meaning of the M1Trade Union and Labour Relations (Consolidation) Act 1992),
(e)his physical or mental health or condition,
(f)his sexual life,
(g)the commission or alleged commission by him of any offence, or
(h)any proceedings for any offence committed or alleged to have been committed by him, the disposal of such proceedings or the sentence of any court in such proceedings.
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btw I notice the FaxYourGP (https://www.faxyourgp.com/) facility isnt available atm either.
The care.data project has been postponed until the autumn.
We've decided to follow Ben Goldacre's advice to wait until May to see what improvements are made.