I'm wondering if anybody has any thoughts about it, whether you'll opt out or not? Clearly it's a default process, if you do nothing, info about the care you've received will be on the database.
Do you have any concerns due to the controversial nature of thyroid treatment? Whether you think it'll go against you through having your data shared? Are you concerned about any potential security breaches, or who will access your data? Concerned that although your details won't be visible, your NHS number and postcode is, so it's not hard to see that it's you then.
Any thoughts about this please?
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fiona
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I posted a comment on the Guardian site the other day about this.
One of my points was that many medical records are grossly misleading. For example, with all our self-medicators it could very easily skew the appearance of the effectiveness of the standard regimes. Those that the medics think people are following rather than what they are really doing.
The idea that pharmaceutical companies (and other researchers) might base decisions on them is worrying.
You are so right not only regarding self meditators but what also concerns me is all the blatant mistakes GP notes. I have no confidence that the information will be accurate or kept anonymous in the long run.
I think the whole issue of the real relevance and meaning of the notes needs to be properly considered before any decision is made, centrally or individually. However it appears that the steam rollers are fired up and will push it through regardless.
If this was purely information sharing for research I doubt that identifiable information would be required. I believe the real purpose is to sell my personal medical information to non-NHS profit making 3rd parties and as such I have opted out.
Imagine having genetic tests results or illnesses which are genetically passed on and how that information might impact on family members ability to obtain affordable insurance or Virgin Care eg decline to treat those family members because of MY genetic or medical history.
I have no objection to my anonymous medical data being made available to NHS and non-profit making researchers but not in any circumstances to big pharma or private care companies.
exactly my concerns clutter , as we are all aware this current administration are only concerned with the sell off now and take the money syndrome -- with no thought to the longer term consequences to the people that it can effect -- if and when it then goes pear shaped I have no doubt they will hide behind political bunkum and sweep it under the proverbial carpet as usual .......but at the cost to US the people that it will EFFECT for a long time to come ........ just think of the DVLA who now make a PROFIT from selling information to virtually anyone who will pay a fee to them for it .---- FACT --- another concern is the fact that there are no REAL safeguards in place to prevent any missuse of the proposed system .....alan
I regularly withold info from my useless NHS Gp. Under the DPA, information about my health can only be shared with my consent. EG At last endo appointment i told him i did not consent to my private blood test results being shared with her since I have paid for them due to her uselessness and she adds no value to my care so does not need them.
As a rule i always refuse to fill in questions about my ethnicity, etc. Why should i help them attain their little tick box quotas when I have experienced racism and discrimination a number of times.
I also had a complaint against an NHS hospital upheld by trhe Information Commissioner - the hospital sent medical reports to another part of the NHS without my consent.
The NHS has an appalling record on information handling, so everyone should be pro active about managing their information. Unless you recently actively opted out, your data is shared by default with private companies from what i heard. See Clutter's post on this thread.
Since i have also experienced negligent NHS GPs tampering with my electronic records after the fact to cover their backs, I opted out of my records being available centrally.
There could be several reasons why somebody is against it. I agree, if you've been self medicating, those facts scewed to make patients look irresponsible, and not a balanced view.
Or if lucky and finally got T3 prescribed, it would worry me, somebody could interfere, tell the GP off for prescribing it, ad the next thing you know you cannot get your prescriptions any more.
The thought about life insurance occurred to me, that my own premium could go up through being on medication, or as said, people's family member's go up.
I agree, mistakes in records, or info that's so brief it's nether use nor ornament in records. There are all sorts of things, which could become misinterpreted, as is human nature when reading something, and statistics or research can get biased.
It's not going to be totally confidential or accurate. If they want stats or morbidity and mortality of illnesses, then the data will be inaccurate for an area, as the informed and politically minded might opt out of it.
I don't like it if the NHS and others profit off us.
My Dad was under the impression it could benefit you should you have to go to A&E, but I don't see anything to suggest that.
I had a quick look t that website last night, but I'll pass it on to family and take a closer look.
Fiona, some years ago a Summary Care Record (a basic outline of your health problems) was produced and that is available to the A&E staff (unless you opted out). This is probably what your dad is referring to.
Care.data is different, it's not for use of clinical staff (in hospitals etc.) it will be used by researchers and potentially by private companies for the purpose of research. There is nothing to stop the government (in the future) making that data available for companies to profit from. Once your data is uploaded you can't have it taken down.
I'm definitely opting out of care.data - I also opted out of Summary Care Record as my notes are inaccurate and could therefore mislead staff in the A&E. I just have a medicalert bracelet instead.
By all accounts that summary for A&E staff isn't fully off the ground yet is it? So if that's not done yet, then this project is a minefield I would have thought. I can see more of a benefit to the summary, if you are in a different part of the country, eg to visit family, or away and you need an emergency doctors appointment, or A&E but not this.
The more I think about it, the more I don't like it. I think anybody politically minded will opt out. If I've found it difficult to get my head round, then I'm sure a lot won't bother considering it.
What annoys me, it feels like large scale snooping with an objective of cost cutting, not medical progress. Oh this surgery is spending too much, get people on cheaper alternatives, cos they won't notice. Or there's no evidence for liothyronine do hypothyroidism, or sodium valporate for migraines. Rather than opportunities for more people to have the meds that help me (as an example) I bet it'll be any excuse to get people back to square one and off the tablets that help. That'll save money, as I doubt NHS can afford much medical progress.
Whether there's a misconception 're anonymous or pseudonysed data... even if it's only ever anonymous data passed onto researchers and third parties, so issues like the above won't get back to you... why the need for DOB NHS number and postcode in the first place? To monitor an area so to speak, but withheld more sensitive data, that be worked back to the prescribing GP, if something stands out.
as a cynical person I never ever think that information of this nature is never passed on / sold to third parties ---- if this didn't happen WHY request dob/nhs No / postcode etc. -- this information CAN AND DOES SPECIFICALLY IDENTIFY YOU !!!!!----and that info will benefit someone or a company ------- who then benefits from the info gained ===== DEFINATLY NOT THE PATIENTS I will guarantee that ......sorry for the rant but I do feel VERY STRONG ABOUT THIS ISSUE ......alan xx
Letter winging its way to surgery. Can't trust NHS with my health and see no reason to trust them with my personal information.
Another issue is that people with genuinely rare diseases are likely to be very much more readily identifiable than average Joe Blogs. If you have something that only occurs in 1:100,000 then you need a pretty large town before you are going to see more then a very few cases - add another factor (gender, age) and you have it narrowed right down.
Quite how this would be done, and by whom is another matter. But the opening appears to exist for it to be done.
Yes of course. Even in general, people may feel embarrassed by a diagnosis of mental illness, HIV or anything else for that matter. Medical history was always supposed to be confidential, meaning between you and your doctors. People might choose to avoid telling people they know about a diagnosis, so I can see why they'd want to opt out then. And that's before you get onto rare conditions, or somebody living in a very small postal code area.
Something else that annoyed me. In times of recession, how can the Government finance this project, and how will it recoup any money? As it is my friend who works as a medical secretary at the hospital tells me things like they're overloaded with work, they've previously laid secretaries off. Then they employ a manager to do with putting them on training courses, then she gets an assistant. So you could say it's more funds directed away from patients who need the help, over and over.
Locally, my GP's record of my health is not available to any other department (specifically, podiatry to my certain knowledge). I really doubt that, as 'they' still can't manage to share medical records they will be able to make this new initiative work. What ever happened to that vastly expensive computerisation that was supposed to keep all professionals involved in one's care up to speed?
Rod's point is a good one. But if there is a void in one's medical record where thyroid treatment ought to be - what are researchers to make of that? Thyroid problems, like puppies, are for life. One is, obviously, receiving treaetment from somewhere, with something. I am more concerned that when my records are passed to another GP (when I move) there is a big red notice inside saying "stroppy cow". Opting out will not, unfortunately, prevent thoughts like that from being immortalised.
Bit late to reply but if you look on Pulse website (GP's) they themselves are mostly in disagreement and some are even opting "All" of their patients out of this.
I would suggest that "everyone" should apply for a full copy of their medical/mental health records.
The maximum fee they can charge you is £50.
I don't think I will ever be able to come to terms with many aspects of my records (what is written "lies", deletions, true picture hidden in attachments and not transparent so I am being constantl put at risk)
My records are going nowhere especially as mentioned above.
There is a family history section in my records "IT IS BLANK" and despite having told them myself, secondary care noting same and bringing it to their attention (GP), Noted by same gp practice in referals to secondary care and same gp practice recording it in their consultations.
I'm curious, what have you managed to achieve with such inaccuracies? Have you managed to get anything updated to give a better picture? Clearly getting a copy of your records has opened up a can of worms.
At the moment I am still trying to come to terms with many aspects of my records.
My Son is helping.
What I do know is if they make mistakes (including serious ones) and you question and can prove many aspects to the GMC, it doesn't end ther,. it gets worse especially if it involves a worsening mental health .
we complained to the GMC
1/ was told not something they deal with!
2/ we replied and insisted they were wrong
3/ they said they would reconsider but they were making us aware that they also protected the GP?
4/ They said they didn't receive attachemnts of proof? which were included in the e mail. When we checked the status of the "skyline" transfer of data we realised that they had forwarded our data to a "G4S" employee from the "government security onformation office"
I have now been added to the "informatics" mental health system.
It couldn't get more complicated (all because of negligence)
It's taken it's toll more than anone could ever imagine.
I was allocated in 2012 a "mental health advocate" who turned out to be a "forensic" mental health advocate who after me telling my story,to him asked me "have you ever been detained before? I was then subjected to attempts to give me Borderline personality disorder to it appears now, new attempts to now perhaps give me dementia!
I am 50 + suffering from Complex post traumatic stress disorder and hypo
who has completely lost faith in the "systems"
It has been 3 years of hell for me and my 2 Son's and 1 daughter all because of negligence.
I have only recently been given an assusrance that whatever they subject me to from now on including their powers of the "mental health act" I will be supported through the legal system and my story will be told
Borderline personality disorder isn't a good label to have, somehow says it's the way you are and cannot do anything for you.
They can't just diagnose dementia/put that on you like that. You need tests. So they're either thinking you've got it or not, and if there's any doubt, the NHS should do the testing.
Iv'e been privately assessed now. And can only go the private route as they have subjected me to hell on earth trying to give me BPD for that very reason. I have proved that they attempted to give me 2 traits on 2 separate occasions when they tried to subject me to similar totally innapropriate treatments (that caused my emotional deterioration) IAPT.
I wouldn't trust any more assessments as it is perfectly clear that when mistakes are made they have the power to allocate to you anything they feel will "put a question mark" on your character.
I even had to be witness to a "Proffessional" tell my 20 year old son (after I understandably challenged the 2nd set of traits he was giving me because I had been unable to step into a totally undisclosed/non transparent therapy with a therapist who did not have trauma expertise) I was told that I had 2 new traits black/white thinking and emotional manipulation. The emotional manipulation he said was because I had threatened to commit suicide. I asked him does it take someone to commit suicide to be believed? he simply replied "Well BPD people do commit suicide"
This is the professionalism we are being subjected to.
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