It took me a while to work out what ‘governance’ means – and a lot of “I know this might be a stupid question, but…” My conclusion is that research governance is about maintaining high standards of research conduct. This includes not breaking the law. And who would have known there were so many laws that I could break, sitting here in my university cubicle, geeking around with data and statistics?
This week’s saga involves linking disease register data to Hospital Episode Statistics (HES) data. Now stick with me here, because I hope this is going to be more interesting than you think right now.
A disease register collects information on all the people with a particular disease in a particular area. Fuse has access to quite a few different disease registers. Hospital Episode Statistics is a massive database of information recording every treatment delivered in hospitals in the UK, every outpatient appointment that takes place, and the diagnoses of every patient involved. It’s geek-heaven.
So, we would like to link our disease register to HES to work out what other illnesses people on the register suffer from. This is possible because both the register and HES use NHS numbers to identify individual patients. We know the NHS numbers of the people of the register, and we can use these to look up the same people on HES.
The problem is that we do not have patient consent to link the registry data to the HES data. To be honest, I bet you no-one has ever asked your consent to collect the HES data. And, to tell the absolute truth, no-one asked consent of the people on the disease register to include them on it. This is because all of the information in both the disease register and HES is extracted from routine medical records. Your doctor writes in your notes that you have a particular disease and so your information is sent to the disease register. You get admitted to hospital with breathlessness and someone writes in your notes that you had a chest x-ray and were treated with antibiotics and this information is sent to HES.
This turns out to be legally challenging because us geeks are now asking to use that routine medical information for research. Your information was collected by medical professionals for their work and to maximise yoru care. That's generally accepted to be okay. We now want to use it for research and the legal position is that that's not okay unless we ask you first - or seek special permission for the law to be waived on this occasion.
There is one more thing I need to tell you here. I, and none of my colleagues, will ever be able to tell who the individuals on the disease register are. The hospital that holds the register stripped out all the names, addresses, and dates of birth before they let us have it. Similarly, if we ever get hold of the HES data there is no way we will ever be given names, addresses, dates of birth or anything else that would allow to tell who was who. The data provided to us is entirely anonymous.
Probably quite a lot of people have no idea there was a massive UK hospital data warehouse or that disease registers exist. But now that I’ve told you, you might not be that surprised? What I’m wondering is: are you bothered? Do you care that there is information on all your hospital visits? Do you care that someone could link it to something like a local disease register to do some research? Remember, it’s all totally anonymous. All it is is a spreadsheet showing that person number 73 is male, attended an cardiology outpatient appointment in September 1989, was started on blood pressure lowering medication in October 1989, was admitted with chest pain in July 1993, blah, blah, blah.
I don’t care that much. But that’s maybe because I’m a geeky weirdo.