Helen Salisbury: The ethics of medical memoirsBMJ 2019; 367 doi: https://doi.org/10.1136/bmj.l6270 (Published 05 November 2019) Cite this as: BMJ 2019;367:l6270
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I have encountered what might be seen as the opposite dilemma to that described here, the ethical issues for patients who write about their experiences in the health care system. Should the illness narratives of patients give doctors and other health care professionals the same level of anonymity as patients themselves expect when HCPs write about them? Do medical people expect this? Little attention seems to have been paid to these questions, even among academic writers, although many of the authors of such stories are not academics and may give little or no consideration to such matters.
Competing interests: No competing interests
Hi Dr Salisbury,
Thanks for the fantastic column about medical memoirs.
I wanted to tell you a little about the approach I used when writing my book (Critical - science and stories from the brink of life) as I too was concerned about these issues.
Firstly, I decided only to use patient stories that had explicit consent.
This included revisiting a family over a decade after caring for their son who sadly died.
Initial contact was via a letter, written in conjunction with a psychologist and bereavement charity.
There were lots of opportunities in the letter for the recipient to pursue it no further.
“I’m really sorry if this letter upsets you, please put it in the bin and have no further part if this is best for you al and your family”.
I had positive responses from 80% people I wrote to, no response from 15% and one who didn’t want to pursue it any further. I then met with all the patients and families, sometimes repeatedly and ongoing to today.
Interestingly, they all wanted their story to be told and some even insisted on using their real name in the book. This was a surprise to me and the publishers.
The ways to navigate this territory are unclear and grey - I hope the approach I took was one that put patients at the centre of the concerns rather than the book. Using stories where consent was possible restricted those that I could discuss, but this was a price worth paying for maintaining trust.
Competing interests: I have published a book called "Critical - science and stories from the brink of life".