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.

ChildProtectionLine, good or bad?

I only heard about this via the media, so I contacted the Scottish goverment about it. To my suppsrise I got a prity full reply (not often that happens!).

From what I could make out from the reply, there are good and bad points about it (some of the questions/issues are still not sorted).

Good. This is a single phone number that people can call if they are not sure who to call. The people on the other side of the phone will be able to direct people to the relevant department/service. That means if the SS (social services) are the best people to contact, then they will be directed there, if it’s the police, then they will be directed there. This should save time in getting things sorted and it makes sure the right people are contacted. It should (if it works OK) mean that children can be saved/protected more than they are just now.

BAD?. There are few things in life that are all good, and this is no exception. In theory there will not be a creation of a national database of accused, but with the goverment looking to creat things like the childs index, then it means there is a database be default. It also means that that anyone with access to the child index (SS, police, schools, local authorities, fire service, health authorities etc) will be able to find out the family are being investigated. Some of them should know, but why would the fire service ‘need to know’? In theory those accused will be able to clear their names, but that is easier said than done (dont forget that forced adoptions have increased 3 fold in some areas after ‘targets’ for adoption were brought in and the SS are famous for miscarages of justice and operate under secrecy to the extent the concept of a ‘fair trial’ is not a garantee). There is also no way of knowing if their file will be deleted if they are found not guilty (remember even children never charged or cautioned have a ‘police record’ and have their DNA stored nationaly). It could (even if this is not the aim) mean that a national network of accused is set up due to the ‘joined up’ thing the goverment is keen on.

There is also the issue about people own perecption of what is right. There are people that think you should never drink when you have children, so could they report people that fail to meet their own personal standards? The theory is, they accused would be investigated but as I pointed out above, this has it’s own problems. There is also the issue of double reporting. That should be sorted out quickly, but the fact that some others have been brought in, such as the SS, could mean it appears on their childs record available via the child index. Having never done drugs, I dont know if people seeking help are always reported to the police or SS. This new scheme seems to garuntee they would be brought in.

There is also a question mark about how you check people are drinking too much or taking drugs. Would all accussed be forced to have a edical exam to test for drugs or conditions that could be caused by drinking? Would they be required to have a breath test for alcohol on a random basis? With goverment having a ‘nothing to hide, nothing to fear’ card for everything, would this be used against parents? Would children be asked about the acctivities their parents get up to? Would the accused be allowed to chalange claims made by others, such as neibours?

Would info get into the accused medical records? This is something the reply does not full answere. It is important that the choice about having the info stored in the medical record of the accused is only done with explicit consent, yet that is not a garuntee. Dont forget who will have access to this record. It is not just the GP, there are all the doctors/nurses and a large amount of admin staff at the practice (and future practices) who will have access. There are insurance comapines, employers can ask for it and with the goverment looking more and more at national records. I have managed to avoid some of these problems (cant do anything about insurance comapines or employers as the Scottish goverment could not care less about the level of access these scum have), but that was only after being treated like dirt by NHS Grampain and other PCTs, by me endgaering my health and by me not giving in to scum. I dont know of anyone else who has that protection/privacy, yet info could be getting put in their records without their explicit consent.

I fully support the idea of protecting children, but there is so much secrecy (this only protects doctors, SS, creates distrust, causes serious misscarages of justice and allows SS to do what ever it takes to get children. See links bellow).

There does seem to be better ways of helping drug users and people with other problems. The only problem is, this would need to be a truly confidential service and the goverment would ratehr spend money on paying locums £1000 a day or spend money on out of hour services to justify spending hundreds of millions (£20 billion in England) on national medical records that are less secure that the goverment claims. They could spend more money on having enough social workers, but again, they dont seem to fancy that idea. They seem to think it is better to set up a net work where neibour spies on neibour and thos who object to be spied on are simply told ‘nothing to hide. nothing to fear’. At the same time, they complain if they are monitoured talking to a suspected terrorist. I am not saying nothing should be done, but is a national phone number the best way to proect children or would it be better to help the people this number is targeting (suspected drug and alcohol abusers)?

Some links you might want to read:

http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2007/07/15/nadopt115.xml

http://www.forced-adoption.com/introduction.asp

http://www.telegraph.co.uk/news/main.jhtml?xml=/news/2007/08/05/nadopt105.xml

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.