Liz Wager: Are we making too much fuss about patient confidentiality?

Liz WagerIn my last blog, I addressed calls for raw research data to be made available. Like most other discussions about publishing data I started from the assumption that individual information must be kept confidential at all costs. That’s a helpful stance when considering the classic doctor-patient relationship but I wonder if it is always necessary when it comes to clinical trials.

Confidentiality in the surgery has various benefits, such as making people more honest and open when discussing their problems. Patients might be coy about their sex lives or drinking habits if they thought intimate details would be broadcast to the world. But how many people would object to the fact that, if a trial database were published, somebody might find out that they had migraine, acne or high blood pressure? In these cases the supposed harms of loss of confidentiality seem meagre compared to the potential benefits of being able to spot fraudulent research or, more likely, biased reporting.

I admit my radical solution wouldn’t work for trials in stigmatising conditions: people probably wouldn’t want their neighbours to know they’ve been treated for gonorrhea. But I just wonder if we could try, when obtaining patient’s consent to enter a study, to ask whether they would consent to the anonymised dataset being made public. People who didn’t consent would have to be excluded (admittedly a potential problem) as it doesn’t make sense only to publish a partial dataset – it has to be all or nothing or it can’t be checked or reanalysed. And it would be important to explain exactly how the data would be displayed and what efforts would be made to anonymise it.

But if somebody told me that a publicly available website describing me as [female, age 48, weight 59 kg, non-smoker, in Buckinghamshire] would also reveal that I had received placebo for a certain time in a trial for (let’s say) dyspepsia, I don’t think it would put me off entering the trial. And if it was explained that, by taking this apparently small risk, I could be helping ensure research integrity, I think I’d definitely go for it. What about you? Is patient confidentiality really sacrosanct or is it, perhaps, a smokescreen behind which those who don’t want their data scrutinised are hoping to hide?

Liz Wager PhD is a freelance medical writer, editor, and trainer. She is the current chair of the Committee on Publication Ethics (COPE).