Data Protection Act 1998
Being a fan of privacy I thought I should point out something.
If you leave your eamail address on the blog, others will see it, so do not do it if you do not want others to know it! The.
If you email me directly then your email (and your address) will remain strictly confidential (unless I upset the state and they get a warrant tto get access to my email!). I will assume that when you send an email, you do not wish to have it shared. If you do not mind having it shared or if you want it shared, you have to tell me or I will not do it. If you do not mind me using extracxts from it (this will never be your name, email address or your IP info), then again please let me know. It would be handy if you allow me to use extracts, but remember, you do not need to allow this.
If I email you back, then the same rules apply.
Introduction to the site
I will be updating it to show the state of medical privacy in the UK, or rather lack of.
It will show what admin staff at GP practices are being allowed to do, will show doctors/nurses are being allowed to access data where the patient has said no and where the data is not relevant. It will show the sort of things you can be asked to declare to employers, insurance companies and show how far the research community will go to get their hands on our identifiable medical information, even where we have said no.
I should point out that most of this is relevant not only for Scotland, but for the rest of the UK
researchers
Your data might be getting shared for research without your consent. This is very complicated. If you have had treatment you should contact the data controller to ask if it has been shared. Even this might not be straight forward as they may be allowed to say no even if it has if they claim saying yes would cause you or others harm. Identifiable data from GUM clinics has already been shared under Section Sixty of the Health and Social Care Act 2001. There are even laws that allow the doctor to be fined £5000.00 if they respect your rights to privacy and refuse to share your clinical data!
There are an ever-increasing number of reasons for sharing our data and a growing number wanting access (source Health Care Standards Unit).
According to the Patient Information Advisory Group, Section Sixty can not be used if you have said no (but remember there are other laws that will allow them access even where you have said no and trying to get this refusal put in your records is exstreamly difficult. Over the last 20+ years I have said no to sharing several times but it never seemd to find it's way into my records and some of those that were aware of it withdrew medical treatment).
There is also a lot of controversy about why cancer researchers in the UK are allowed access to identifiable medical data when others such as the Germans are capable of doing research without it. That hardly makes it a "need to know" basis for sharing, yet it gets done. There is also nothing stopping them from asking the patient and allowing the patient to see the info before it is sent. This would help the patient know what is being shared and allows them to check it to make sure what they said was recorded accurately. It would also give them the chance to supply data they did not think was important). It seems however, that researchers in the UK do not like this and want to get the data regardless of what the patient thinks/says.
PIAG have even gone as far as to say it would be acceptable for identifiable data to be released about patients in the final stages of their terminal condition without their consent. Some people seem to think that it is insensitive to ask but OK to steal it behind the patients back and just hope they do not find out. If that is not a betrayal, then what is? It seems a case of what they do not know, will not hurt them, until they find out that is.
Patient rights
As a patient you have the following rights (I have put sources next to most and willing to back the following information up). I will be posting more about this.
1) You can ask for a doctor of the same gender for intimate examinations ( source, Strawberry Gardens Medical practice, Morecambe). Even hospitals will allow this but this might not always be possible as it depends on how many doctors they have and I think it would depend on who asked, for example a childs need might come first, something I can understand. If that is not possible at your GP practice, go to another practice and tell them you are in need of immediate medical attention and due to the nature only willing to see a male/female GP (you do not need to tell them what it is for). In some cases some patients might prefer a doctor of the opposite gender. You should also be asked if you want a chaperone to be present and they should be of the same gender as you (as far as I am aware, you should not be in view of them).
2) You can refuse to have a trainee present. Might sound obvious, but this was not always followed in the past, especially by some teaching hospitals. In the words of a friend of mine "they viewed those patients as a piece of meat on a slab".
3) You can refuse to allow data to be shared with admin staff and others. "You must respect the wishes of any patient who objects to particular information being shared with others providing care, except where this would put others at risk of death or serious harm." – Source, GMC. This is also seems to be backed up by the NHS code of practice 2003 and the BMA. It is also something the Clinical Governance Support Practitioner NHS Grampian (although he seems to have turned a blind eye to the fact that this is happeneing and practices in the Frampian area). You can also have clinical data withheld from other doctors/nurses unless it would put others at serious risk. For example if you have been raped/abused, you do not need to let every doctor you see know if that helps you cope.
4) You can refuse medical treatment. This can be overridden if you are not deemed to me mentally competent. This has been controversial in the past.
Tam Fry, the chairman of the Child Growth Foundation seemed to be planning on forcing children to give data for the ‘fat stats’ exercise the government wanted when he stated "The Social Care Act says that when there is an urgent need for medical information it can override an individual's right to refuse." (The Times, 21/12/06, p.24). In the future they will most likely get this info from their National Care Records without consent
Other people with access
When you tell your doctor/consultant something, sometimes it is just between the 2 of you, but that is not always the case. It depends on what practice you go to and even between individual doctors./consultants.
For example some doctors make their own notes, while others simply tell one of the clerical staff so they can put it in your notes. That means if you were to see 2 different doctors for something, the people that know will vary. This means in some cases only the GP will know about that UTI, thrush or sexual problem, in other cases, the info will be shared.
Even if they do not share it straight away, a lot of practice will allow admin staff full access to records in order to get information. For example if they wish to do a clinical audit, then admin staff will be allowed access to the clinical data where the patient can be identified or where they can guess who it belongs to. Nobody, not ecven NHS Grampain seems to be able to say admin staff need to know you have been raped/abused, had sexual problems, emotional problems, chest infection or a bad case of thrush. They are also not capable of saying why a receptionist needs to have access to the Emergency Care Summary.
In some cases they can use what is called anonymization service. This would involve sharing identifiable medical data with a third party so that they can remove your name, address ECT.
The records can also be accessed for financial reasons. Example: At a meeting I had with a GP at Coastal Medical Group in Morecambe, the GP pointed out that for them to get paid for doing things like asthma clinics they must review a minimum amount of patients. To get paid they must also send clinical data (things about identifiers seem to be a bit grey) such as peak-flow readings, blood pressure and some other things (he has no idea what the trust does with this). This data can be extracted by admin staff.
The same GP pointed out that admin staff at 3 other practices (there was 42 clerical/admin staff) would be allowed access to identifiable medical data even where the patient has said no (check out the ‘patient rights’ section about this). The GMC seems to want this to go away. I am not the only patient that has had this problem.
Other practices, such as 2 in the Bucksburn area of Aberdeen seem to share all data and does not allow patients to say no. For example if you see a nurse for your asthma review, the practice gives her the record so she can get the info. What’s wrong with this? What if that record shows you had sexual problems, emotional problems, STD/STI, been raped/abused or had drug/alcohol/gambling problems years ago? You might not care if that is shared, but what about those that do not want it shared? Should they be forced to allow it? As far as the practice is concerned the reply seems to be yes and they can/will refuse treatment if you say no even though you can prevent it (see your rights). A GP can send you to see a consultant and not disclose that you have had things like an abortion as they should only be disclosing relevant medical data linked to your condition (but you can prevent this sharing according to the NHS and GMC), yet they are being allowed to share such information with a nurse. This refusal to allow restrictions has been approved by NHS Grampian managers. One practice manager even went as far as to say that admin staff would be allowed access to such data. What if this caused ‘harm’ to the patient? In her words "that is the way we do things". In other words if it causes ‘harm’ to the patient, that’s tough luck and the data will still be shared and accessed. Whats more if you have emotional problems and want help, they will not provide it unless you consent to every doctor/nurse and even admin staff knowing. If this leads you being clinicaly depressed to the point that it harms you and others, then it seems to be a case of tough luck. Same thing goes for all conditions. It would seem your discomfort is not relevant to how they make their profits so they can earn £100,000.00+ a year.
With records set to go national, you can wave good bey to what little privacy you had.
Employers
So what can employers ask you? Quite a lot actually!
For example I have had questionnaires that ask (I am working on a way of getting a sample form online) if you have ever had emotional problems, had diarrhoea, vomiting, dysentery, food poising and any other medical problems. In other words if you have seen a GP/nurse for something, you must declare it directly to the employer and anyone else that handles the form. You also have to supply 'details' for each thing.
Even if the employer does not misuse the above info (we all know this happenes) and does not tell anyone (again we all know this happens), I for one think asking those sorts of questions is bang out of order and the CO-OP should not be asking them.
What happens after you start? Well think about it. If you had to declare this sort of info before starting, they will most likely want to know it after you start, so no way to get help with emotional problems or anything else without telling the boss. I for one think that is bang out of order. I am all for employers knowing if you are capable of doing the job, but that in no way should allow them to know our medical info.
The Job? Stacking shelves and serving customers. Why would that thrush, UTI or bleeding from your rectum prevent you from doing the job?
Some employers can also ask you to have a complete medical examination, such a the ones BUPA offers for employee screening. With that in mind, you might want to ask for doctor of the same gender if you are being asked to have a medical for an employer, just in case in involves anything more than very basic stuff (you are allowed a GP of the same gender for intimate examinations even if it is not for a job). If your not bothered then that is is up to you.
The UK health profession refuse to do anything to stop this sort of thing and last time I contacted the MSP for my area (an SNP guy in Aberdeen) he seemed far from interested in stopping it.
