Should patient confidentiality be waived for research purposes?

theconversation.com/coronavirus-researchers-no-longer-need-consent-to-access-your-medical-records-138567?utm_medium=email&utm_campaign=Latest%20from%20The%20Conversation%20for%20June%201%202020%20-%201637715738&utm_content=Latest%20from%20The%20Conversation%20for%20June%201%202020%20-%201637715738+CID_7572b6b8b33ba230f1405f46f5ae94b2&utm_source=campaign_monitor_uk&utm_term=Coronavirus%20researchers%20no%20longer%20need%20consent%20to%20access%20your%20medical%20records

Good article Jane, thank you. What is doesn't say is whether this data is anonymised, which anyone can see anyway, pseudonymised, which despite promises to the contrary can be joined up for identification purposes, or data in the clear.

I am relieved that CAG is at least still in operation, I had heard rumours it was being abolished, but perhaps sidelined would be more accurate!

The need to treat each other's patients had led to the sharing of GP medical records across areas, with access being given to researchers too. Some are properly asking for the patients consent at the time, others are ignoring this requirement. I did ask if a previous opt out to the Summary Care Record (SCR) would be taken as applying to this data sharing and received the reply that they presumed it would.

I take it you are in discussion with Phil Booth of MedConfidential on this one?

medconfidential.org/ is worth a browse for others reading this.

In answer to your question' does it matter', it depends on whether the data is truly anonymised (just figures) or not. Yes it most definitely does matter if data is being shared for purposes other than that for which it was collected. Most people would be happy to 'donate' their data for research if asked, but there are others who have good reasons for needing to keep their records private.

Thanks for your link B9
Re the question of anonymisation, I followed one of the links in your link, & came across this
This latest project raises a number of questions about access to personal data. In a blog post on the gov.uk site, the Department of Health and Social Care stated that all the data in the store is anonymous, with controls “that include removing identifiers such as name and address and replacing these with a pseudonym” But Yves-Alexandre de Montjoye, head of the computational privacy group at Imperial College London, said that if a third party is given access to the data, it may potentially identify people, adding that all that legal and technical controls do is limit the risk. (*The NHS post has since been edited and no longer contains mention of anonymisation or pseudonymisation*)

As the author of the Conversation piece implied, COVID could be use as an excuse to avoid or bypass the usual stringent governance and I think this is a worry that may apply to other areas of civil liberties if we aren’t watchful.
I think most people would be happy to have their data used if it will benefit scientific knowledge. But presumed consent is IMO a step too far along a potentially dangerous road.

I fully agree with you, and remain deeply concerned. I have a colleague who used to be Heath of Ethics at the BMA who used to talk about 'data rape' she felt so strongly about misuse of data collected for other purposes. Thank you for raising this.