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.