More access to health records?

It is not long since people like me warned about the increasing access to our medical records and now the NHS seems to be confirming our greates fears.

Bellow are links to stories about how there are plans to increase the amount of people with access to our records. It is bad enough a patient cant tell their GP something without having to let every doctor and nurse they see at the practice know about it despite there usually not being a ‘need to know’ basis, It is bad enough reception staff are getting access to our records and knowing our test results and what medications we have been issued, now they want to social care, voluntry orgs, private firms, researchers and never ending list.

 

Will doctors defend the patient right to privacy? Dont bank on it!

http://www.ehiprimarycare.com/news/3915/access_to_nhs_care_records_may_be_widened

http://www.ehiprimarycare.com/news/3947/data_sharing_review_has_messages_for_the_nhs

Types of people who ‘protect’ data

When it comes to medical privacy there is often a lot of talk from those who want to share/access identifiable data about how data will be protected and they can control access. Unfortunatley these are often grouped into 3 different groups.

1. There are those who have a low standard of protection. An example of this would be most GPs. GPs often tell patients that what they learn in the course of their work will go no further and their records are protected, yet a lot will often start telling people about tye patient so the information can get into the patients records, as one of my ex GPs said “doctors do not do notes, that is someone elses job”. In other words, the min the patient leaves, the GOP will tell someone else. I have also found that most calldicott Gaurdians come under this group. As with GPs, their standard of aproprate sharing of data is often far lower than what patients think and when it comes to privacy, they rarely, if ever, will hear both sides of any complaint, usually deciding to side with their friends who also have a low standard. This is further complicated in that they are often paid by the people they are overseeing even though this creates a conflict of interest. Who have to ask whos interest they have at heart, their own or that of the patient? Unfortunatly I have found they have the interest of their own at heart and most would rather protect the reputation of health workers and the NHS than tell the truth. This group of people are the low of the low as far as I am concerned. they lie to patients to obtain data/carry out examinations and when patients do get told they ether attempt to make the patient think it is for their own good and those patients that see past this Bull are given 2 simple choices, ’share or die’. This group will also often share data so that it can be passed to others for targets or payments. In some cases it will be identifiable but even if it is not, the people accessing the records to get it will have access to the identity of the patient.
2. There are those who think they have a high standard by are not aware of what is being shared. An example of this are some Calldicott Gaurdians and some health workers (not all are scum, just most). Some will tell you that when it comes to the police and social services they will tell them to ‘get stuffed’. Whilst this seems good, they are often unaware of data sharing. for example data from the new Summary Care Record in the NHS in England will be copied in a way that police and social services have access. This means that when they tell the police or SS to ‘get stuffed’, the police and SS will simply access the data from somewhere else (such as SUS) or they will alreday have the information anyway. At the same time anti-privacy laws/legislation in the UK is being introduced faster, meaning any promise about privacy is no protection. Other groups of people that come under this are those who work in Sexual Health Clinics. These people are often unaware that identifiable data can be shared with researchers, but I have to say that some will know but simply not tell the patient
3. The last, and by far the smallest group, are those who do protect data. These people are far and few between. they will store data in a way that others can not access and they will stand up to those who demand it. Some will even not record data. An example of this are some therapist. If you wanted some therapy, you can often tell the person you are seeing that you do not want anyone else to know what you are there for. Whilst some will refuse to see you unless you ‘consent’ to notes being kept others will agree not to keep notes (the disadvatage of keeping notes is that they can be accessed under some UK laws by others. Although this does not happen often, it is staill a risk). Some of those that demand they make notes willl often make them very brief and a broad outline.

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.

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.