Forced consent?

I meant to put this up ages ago, sorry for the delay.

 

It would seem that in order to get patients to ‘consent’ to having an electronic record that will in the future be linked up to a national system, some a mental health trust in London has decided to withhold medical treatment from patients. The trust claims that providing care without it going on such a system is not safe. Why they think it is safer to withhold treatment is any ones guess.

 To me, this seems yet another example of how the public are being forced, and even having their life’s put at risk, if they refuse to roll over and give ‘consent’ to this sort of data sharing.

 As always, some links below

E-Health Insider

ComputerworldUK

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.

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 hospital (http://news.bbc.co.uk/1/hi/health/2642861.stm). 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 happening and practices in the Grampian 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 (http://news.bbc.co.uk/1/hi/health/6213546.stm).

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 (http://www.thebigoptout.com/?page_id=30) without consent  

Some examples

Below are just 5 examples of moral/ethical questions that need to be asked about medical privacy.

I decided to do this as a separate thing so that people who have an interest in such things, can see some basic questions that I have.

There are loads of examples, including the example of identifiable data being released from GUM clinics in England without patient consent that I could have put in, but I thought it best to start with the basics

It is because of these examples and the fact most patients are not aware of what is being shared (one patient pointed out that talking to a doctor was like talking to priest) that I get my back up. Informing patients does not take long. It can be as simple as printing off what the receptionist can see and showing that to the patient. Some patients might not be that bothered, but others would be. Some patients might not be that bothered about who sees their referral letter, test results for things like STDs/STIs (cervical smear test results are now held on one national database in Scotland without the informed consent of patients and despite the fact this database is not as secure as it should be) or who knows that they are on Viagra but others would be. It takes seconds to tell a patient that you dictate to a secretary who will know who you are and what is wrong with you, yet doctors and nurses seem to hate the idea of telling patients the truth. They give the impression that they keep info private, yet this is far from reality. Telling your doctor/nurse or any other health worker is far from ‘confidential’. 

Example 1

A girl becomes sexually active but does not want anyone other that her GP knowing. In most practices, that would not be allowed. The girl then become pregnant but wants a termination. She is now faced with 3 choices.
1) Tell the GP and allow her (or him if they chose not to see a female doctor) to share the data.
2) Try and force a miscarriage and not report it.
3) Go to a back street abortionist which may not be done safely and she runs the risk of being abused.
I for one think the latter 2 choices are dangerous and I find it appalling that the health profession seem to think these are 2 viable options.

Illegal abortions still take place in the UK. What has to be asked, yet the health profession refuse to ask, is, are illegal abortions taking place in the UK because the health profession refuse to allow access for legal abortions unless the woman agrees to inform others? If the answer is yes, then the health profession can/should be held responsible for illegal abortions. In other wards, the buck stops with the health profession. 

Example 3

A man is arrested for sexual abusing children, or ay other crime. The man is arrested and then questioned at which time he admits the crime. The only evidence the police have is the mans confession. The man is then charged and brought before the courts. At this point it is discovered that the man had not been read his rights after being arrested and had not been told he was under caution. He had also been lead to believe that what he had said before being arrested would ‘go no further’. Because his rights were breached, what he had said in the past could not be used as evidence, he then walks free.A patient. tells a doctor/nurse something under the impression that nobody else will know and unaware of the fact that the data would be used by others, such as for insurance or to determine if the idividual broke the law. The patient then finds out data latter date about this and the doctor then simply tells the patient this is the case and the patient can do nothing to stop it. If that means the patients would not have disclosed data or be examined, then that is tough luck, the patient has fewer rights than the criminal. If the patient happened to be a victim of the above crime and had sought help due to this, then that raises one big question. Why is it the patient has less rights? Their attacker walks free for not being told the truth, the patient simply has this back dated to allow data to be shared and accessed.I for one find that imoral, yet it gets done almost every day in the health profession.

Example 4

If I was to lead someone to believe that I was a doctor so that I could carry out an intimate examination on them, would it be an assault/ sexual assualt even if they agree to me touching them? I would say yes.If a patient was to allow a doctor to carry out an intimate examination because of they thought tht only the GP would know why they were there and what was wrong with them but the info was then known by others (ether from reading the info or from thr doctor dictating the info to them), would that be a assault/sexual assualt? Again I would say yes.A lie to touch is still alie no matter what your profession. This sort of assualt goes on almost everyday in the health profession, yet it goes un-punished

admin staff and medical records

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 even NHS Grampian 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.

Researchers and medical records

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 extremely difficult. Over the last 20+ years I have said no to sharing several times but it never seemed 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.