I want my bank to do this:
http://www.theblaze.com/stories/2014...n=ShareButtons
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Noxvayl (03-08-2014)
Long thread this- I tried to skim read all of it, but I may well have missed a pertinent point. Anyway:
Well, funny how people with similar principles can come to quite different conclusions about how best to proceed. I was straight up to my GP with a pre-printed, signed form saying that they may not share my 'anonymised' data when this came up last year- my wife and my mum didn't take much persuasion either. My mum had cancer in her 30s, my wife has been treated for depression. There's nothing really wrong with me except that I drink too much booze- and a couple of times a year it plays havoc with my guts and I phone in sick. Anyway after about my sixth sick day in 3 years (so 2 per year, hardly a poor sick record ) my boss insisted that I go to the doctor to see if I had a chronic complaint, like IBS- he agreed that I didn't, though sent me for a blood test to make sure, the results of which I didn't make an appointment to see, because I was perfectly healthy.
Anyway, a year later I was travelling to Africa and had to see the practice nurse for the jabs I needed. Nice woman, but completely unaware of the fact that I could see my computerised records over her shoulder...which read something along the lines of "...patient nonchalantly claims that he can stop drinking any time he likes..."!
There's no way I'm having that shared, anonymised or not! Same deal for my mum and my wife- if some smart data miner puts two and two together that's their travel insurance through the roof!
As you can see from my sig which I've not changed for years, I was a serious supporter of No2ID when the Labour government were proposing the National Identity Register- I turned up to several demonstrations in person and donated my own cash. There was no way I'd accept being told to turn up for cataloguing just because a government I'd never voted for told me to.
But...I really don't care what private companies have on me. I like it when I scan my Nectar card and it spits out vouchers. I try to get most of my shopping from Lidl and Aldi but my cats don't like their tinned food- so if Sainsburys are going to give me 100 Nectar points for spending £10 on pet products, plus triple nectar points on a spend over 30 quid, plus 10p off per litre of fuel for a spend over £60- then it's going to be 11 x 12 packs of Kit-e-Kat at £5.99 is it not?
That is an interesting example. That isn't anonymised data though, it is sharing of medical records with a doctor/nurse you have agreed to see so that they can easily make an informed decision about a problem you have. Admittedly if you go to the doctor for unrelated things it makes no difference. However, before digital records were kept doctors could ask you if they could call your local practice to request doctors notes and the like to help with a problem you were having, so now there isn't a need to make the phone call. By opting out of data sharing you've prevented the NHS selling or sharing your data with studies being conducted but you haven't prevented doctors you have agreed to see not getting your medical data. It might be that they need to ask you if they can access your data, I'm not sure of the technicalities, but when I looked into it when it first came out there was a distinction between data sharing with regards to anonymised data and sharing data between practices when you go to see a doctor on holiday or after you have moved. Your data is supposed to be confidential and is still protected by patient doctor confidentiality agreement that has been around since doctors existed; now that it is digital we have the option of seeing a doctor away from home who can see previous medical history for you, if you want to allow that.
My experience with this is with an ongoing problem I currently have and the way in which the practice I go to is run. Most the doctors at the practice work part time for various reasons, one of the doctors there is a family friend. So when I need to make an appointment and I can only come in on the Thursday then I only have 2-3 doctors to choose from, can't see my regular doctor. Having my data available to all of them lets me see one and then the other without wasting time talking about what had been done before to try and rectify the issue. A few occasions I've been asked what medication I used previously, it is some incomprehensible name that I don't remember, thankfully it is all saved on my record along with notes about why it was prescribed and then notes afterwards about the result of the prescription. Without the sharing of that data I would of had to wait weeks to see my doctor which would of made the situation worse due to the nature of the problem.
If I found out that the anonymised data that is being shared included my name, location and personal doctor notes, like you highlighted, then I would certainly raise my concerns and possibly remove my data from being allowed to be shared for research. However, an innocuous statement like "...patient nonchalantly claims that he can stop drinking any time he likes..." is perfectly acceptable bit of information to share between doctors that maintain a patient doctor confidentiality agreement. I would go as far as to say that note could be important because having noted it and finding out later that there has been some major trouble in your life caused by alcohol a new doctor you have never seen before can see that the problem could be longstanding rather than a recent thing. That helps the doctor give better advice to you should an alcohol problem threaten your life.
I understand that there could be exceptions to this but I understand the use of notes to be something doctors do to help them make better decisions in the future. The notes they make reflect the patient more than the doctor. Of course there might of been more to the statement you read than you shared in which case you should seriously consider whether the doctor you mentioned that to is someone you want to continue visiting.
One last example I'll give is of patients with munchausen syndrome. They can cost the NHS millions of pounds a year because they hide data from doctors and keep visiting new areas to get attention once they have been caught out in others. Despite having our data digitally kept munchausen patients can still ask for the data other doctors have collected when treating them to be kept hidden. I find this ridiculous because it is a serious issue that is been prevented from being addressed because the patient is able to hide information away from a doctor that they are willing to see. My view is that if you go to see a doctor you enter into a trust agreement with them, an agreement that is protected by patient doctor confidentiality. If you then prevent the doctor from seeing your medical history you are actively working against the doctor you are seeing and therefore have not held your side of the agreement. Doctors want to help us, they've gone to medical school for a ridiculous period of time and been through what could be considered hell for most of us to gain the required experience to become a GP. They deserve our respect and trust, at least initially.
I don't expect people to help share their data with medical research, despite my overwhelming support for it, but if you won't share your data with a doctor you want to help you then you are making it more difficult for that doctor to help you. By not sharing your information with the doctor you have gone to for help, you are actively working against your own best interest.
To go back to your statement: a clever data miner should never have access to doctors notes, not the way the system is set up (as far as I know) and not the way the law expects that data to be kept. If a data miner has access to doctors notes then something very serious has gone wrong. Either a doctor, or assistant, has breached doctor patient confidentiality or the data miner has managed to obtain the data in some other illegal way.
I've had problems with the NHS volunteering my information to medical researchers who want to perform further studies on my diabetes. Now in theory the query 'can we study you' is coming from my local clinic, but in reality the researchers are at a much larger research clinic many miles away.
Now I don't mind voluntarily posting on here of my own free will that I'm diabetic. I'm pretty darned sure i don't want my clinic playing fast and loose with the rules, polling me for do-you-want-to-be-a-research-guinea-pig to outside clinics.
This subject is very interesting to me and I will go on about it at length unless someone stops me. So please, mods or anyone else, tell me to shut up before you get annoyed with my responses. It isn't rude, or bad manners, to tell someone who is being a dick that they are, in fact, being a dick. Honesty is the partner of politeness, and the defender against rudeness.
Ok, so I feel there are some assumptions you have made about the letter that was sent to you that might be incorrect.
The first assumption is that the information being offered to these research institutions is being offered by your clinic, or general practice. I don't think that is the case. What I think is happening is that the research institute now knows this data exists, in digital form, and can be useful. They then contact the practices around the UK and ask for access to this data (it might be they contact the NHS rather than the practices). If someone has opted in to say yes, this data is available, then it automatically gets sent to the research institute without asking you for permission. If your information is closed to outside research, like yours probably is, then you get a letter requesting consent. The way to tell will be by the wording of the letter; it will be some legal type of writing, so more difficult to understand than normal, but it will outline that the research institute doesn't have your data and that you need to say yes to them getting your data. Essentially I think the clinic you go to is not the one who started the conversation, it is more likely to be the research institute that requested information from your clinic which is a very important distinction to make considering the next assumption.
The second assumption is predicated on the first; it seems you think your clinic is manipulating the rules for its own benefit. I find this hard to believe because a general practice will not see any money changing hands with regards to your information. If the NHS sells information the money goes to the NHS, not your clinic and therefore there is no monetary benefit to counteract their obligations to you as a patient of theirs. In this way the NHS can't sell data you have specifically requested to remain private and the general practice which has control of your data is not incentivised to sell it. I think in this way because discussions with doctors have brought out the way in which general practices are funded, which is weird but makes a little sense in this specific scenario. a general practice is funded by the number of patients on their books, not how many times they see them or how well they are able to keep their patients from getting sick. They are funded by the number of patients and nothing else. Unfortunately I can't find information about this when searching, I can find the general structure on the NHS which includes GPs but there is nothing about how money flows in the system which is probably the most important bit of information we could get access to. That doesn't change my view though because a family friend has told me directly, in no uncertain terms, that GPs are funded by number of patients and nothing else.
When it comes down to making judgements on things that are very important to me I am always very careful about simplifying. I always try to think of things that are important to me in as complex a manner as possible. Once I have done that I can then start to simplify but even then it is still dangerous to simplify because you could leave out crucial information. I feel you have oversimplified the factors involved and therefore made incorrect assumptions.
Sad bit is I am not sure any of this is off topic.
Best credit cards deals I have seen around lately: Amazon, Sainsburys and Tesco cashback (in voucher form).
If some companies (I am thinking of a social website) thought they could offer a 5% cashback deal with full disclosure/sale rights of your medical records I'm sure they would, and I am sure some people would want to sign up for it.
So Natwest might be trying to do the right thing, but I don't think it is enough to be competitive.
Amazon is the one I am most interested in at the moment. Not done much research into credit card options yet but it has peaked my interest due to how much stuff I purchase on Amazon and their amazing customer service.
I would be interested to hear what other people think is a good credit card option at the moment. Perhaps I'll start a new thread with that as the question; feel free to start it before me, I will find it and post in it regardless
They are doing what they have to... it has nothing to do with patient doctor confidentiality so they have upheld their part of the agreement and therefore do not deserve to have lost your trust. Have you tried simply asking your clinic to stop sending you those letters? You might find others have done so and they have a list of people to never contact about data sharing. If no-one else has done so it would be wise to inform your clinic of your opinion on the matter so that they know and if they are unsympathetic I would change to a different clinic. I changed my surgery once I was unsatisfied with their competence regarding a health situation I had earlier in my life, so I strongly support making use of the ability to move to other surgeries if your trust in yours has been lost.
The government can probably guarantee that the information you requested to be kept private has remained private because that was part of the deal when making the records digital. You can check on this by opening a dialogue about it with your MP, that is assuming that your MP knows about this specific piece of legislation. Your MP is there to represent you so he should look into it if you have an issue with it.
Why do they 'have to' do this?
It has everyting to do with confidentiality. Thje fact that I'm diabetic has leaked to a body not directly related to keeping me healthy, without my permission. And they're abusing it to spam me based on a profile.
I wrote to them to tell them to stop sending them. Every year I get a couple more.
Again, going back to assumptions. Can you prove your information has leaked to another body that you don't want it to? If you can that is a serious enough allegation to put your clinic in hot water. According to the laws surrounding the digitisation of your medical information, your information is not allowed to pass on to any other organisation unless you explicitly agree to it. It is illegal to do so and therefore if that has actually been done then you have grounds to sue your clinic.
This is an extremely serious matter that is reflected in the serious laws that surround it. There are consequences for breaching those laws. I feel you have incorrectly assumed your information has been passed to another organisation when it has not. Unless you respond to a letter saying that you agree to the terms of the letter, nothing has been given to anyone with regards to your medical record. All that has happened is that you were asked if you would be so kind as to share your information; if you don't respond that means you were not so kind and your information has not been given to anyone; it is as simple as that.
I do not understand why you think your information has been given to anyone just because you were sent a letter, or letters, asking for your permission to send your information. The only way your information could have been sent is if you responded to the letters saying that you agree.
Please read through this website carefully. It clearly states that the information stored on Health & Social Care Information Centre (HSCIC) servers do not have any personally identifiable information attached to it and that there are laws in place to safeguard your personally identifiable information as well as laws in place to allow you to opt out of the data being shared. I take data security extremely seriously so I have made sure I have read that website. It doesn't specifically mention the laws that were created alongside the HSCIC database so I can't cite them and am not interested in reading legal nonsense just to find those laws for you. When it first happened I read the letter sent to me asking if I wanted to opt out of the new system and that letter clearly stated that your information will not be shared with anyone other than doctors if you opted out. In other words, if you wrote a letter (or phoned and had a conversation) asking your doctor to opt out of medical data sharing then you have opted out and your information is not allowed to be accessed by any other person but the GP that you go to see at a surgery/practice/clinic.
I can't stress this enough: receiving a letter, no matter who it is from, asking you to share medical information does not, and should never, mean that your information has been shared. All it means is that someone would like to access your information, nothing else.
No.I'm quite sure that is what the slimy weasels did NOT do. What I'm pretty sure they did was ask round health centres for them to contact a select filtered list of their patients on their behalf. Keeping to letter of law and completely violating the spirit.
On another occasion they did give the information directly to another hospital but in the same group. So I got a med student sending me a questionnaire.
Back when I was a student we needed human victims to conduct tests on. So we put ads up in public stating the criteria and how much they'd get paid. Often the criteria could also have been searched quite easily by comparing against the uni network admissions software and sending bulk mail invites to the matching subjects. We didn't do that because it would have been completely unethical.
They've already filtered me out as diabetic. Too late. Damage done.
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