Thanks to everyone for their posts so far, it's great to have so much interest and debate about the proposed amendments to the NHS Constitution. We've been following the responses that have been posted this week, and will be answering questions that have been raised. Here are answers to some questions raised earlier in the week:
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By madamy, Mon 19th Nov, 17:15
"What I would query is how the researchers would be able to get the information whilst not seeing any identifying details. Who would anonymise the record?"
Good question, madamy. It is not the researchers who anonymise the data: a provider who is legitimately allowed to access the data from patient records provide data to researchers with all identifying information (such as names, dates of birth and addresses) removed.
The Information Commissioner has just published new guidance on how anonymisation can be done and who can do this ? the process of anonymisation of patient data for research will need to follow this best practice.
www.ico.gov.uk/news/latest_news/2012/~/media/documents/library/Data_Protection/Practical_application/anonymisation_code.ashx
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By colleysmill, Mon 19th Nov, 17:31
"My records are currently being accessed due to my medical and subsequent prescription history. I will be followed for life or until I withdraw my consent to this access. This is via the British dermatolgy register in partnership with University of Manchester.
Can it be explained how this is different?"
Thank colleysmill, your example is interesting, and it?s great that you are contributing to research in this way. The main difference is that you have been asked for consent for your information to be included in the British Dermatology register. Where identifiable information about patients is required, researchers will still be required to gain consent from all patients before their data may be used with the proposed NHS Constitution amendments.
The proposed amendments to the NHS Constitution relate to the use of anonymised data. The amendments clarify that the default position for the use of patient data in health research should be that anonymised data can be used for approved research, without consent. Patients still have the right to object to their data being used, whether these are anonymised or not. This follows from a number of studies that suggest that most patients are fine with their information being used in health research if it is anonymised.
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By gazzalw, 19th Nov, 17:50
?I assumed that this has already been going on for years - am I wrong in thinking this? Is it just that they are now asking our permission to do this!?
You?re right to say that patient information has been used in health research for years, gazzalw. However, the system for accessing information has been very complex and a lot of the data have been locked up in red tape, preventing much-needed research. The proposed amendment to the NHS Constitution is designed to clarify the situation. In situations where identifiable information about patients is required by researchers, explicit consent will still need to be obtained from patients by the researchers. But where anonymised information can be used, the new Constitution more clearly states that researchers should be able to access anonymised information for approved research.