Today I address a question on paramedic books. My correspondent says:

There is a wonderful tradition in medicine of sharing stories about patients – such as all of Professor Oliver Sacks’ delightful patient stories, or more recently Dr Adam Kay or Professor Matt Morgan’s works, among no doubt thousands of others.  Some of these have had profound cultural impact. They also include an awful lot of patient information, and I’ve often wondered about how they were legal. 

I’ve been happy to see some paramedics joining them.  Some of the Australian paramedic books I’ve come across include:

  • A Life on the Line – Darren Hodge (AV)
  • Here Hold My Drink and Watch This – Steve Whitfield (QAS) 
  • The Gap – Ben Gilmour (NSWA)
  • Paramedic – Sandy Macken (NSWA)

These books are almost entirely compilations of (presumably) true stories of patients the authors have treated in response to a ‘000’ call. 

These stories all have some attempts at de identification made, such as changing names. However, given how unusual the stories are (there can’t be that many patients crushed by elephants in Sydney’s Taronga Zoo, to give an actual example!), it seems likely that many of the incidents could be recognised by the patient and bystanders – and in some cases by the general public via media coverage.

Broadly, could you share your thoughts on including patient stories in books from your field of expertise?  

Interestingly I was listening to the audiobook of Adam Kay’s ‘Undoctored’ and at one point he relates a conversation with his father who, if I remember it correctly, was alleged to have said ‘that’s not going in your book is it?’ (or words to that effect).  Of course, it did go in the book, but it makes the point that the person having the conversation is not doing so to provide fodder for the person’s next book. Equally a person who call triple zero for an ambulance does so because they need the assistance of the ambulance service, rather than to provide a story for the paramedic’s next book.

I am not aware of any relevant Australian cases where these issues have been tested, but it probably comes as no surprise that they have been tested in the USA – see Valarie Blake, ‘When Doctors Pick up the Pen: Patient-Doctor Confidentiality Breaches in Publishing’ Amercian Medical Association Journal of Ethics (July 2011) doi: 10.1001/virtualmentor.2011.13.7.hlaw1-1107). 

The British Medical Journal, which is interested in publishing material for the education of doctors, says (at https://www.bmj.com/about-bmj/resources-authors/forms-policies-and-checklists/patient-confidentiality) ‘When publishing personal information about identifiable living patients, we require a signed copy of our patient consent permission form.’    The editorial policies of the Medical Journal of Australia (available at https://www.mja.com.au/journal/mja-editorial-policies#PatientConsent) say:

Patient anonymity must be preserved and identifying information should not be published or submitted to the Journal unless essential for scientific purposes …

For all manuscript submissions in which living or deceased people are described and there is any possibility of identification in the text or images, even if only by the person themselves or health care staff who have cared for them, authors are required to obtain a signed patient permission form. Verbal consent is not adequate. Authors must keep this form with the patient records and will be required to declare on the manuscript submission system that consent has been obtained. The article must include a statement that consent has been obtained…

Practitioners are required to put the patient first (Paramedicine Board, Code of Conduct, (June 2022) Principle 1). In context that is to recognise that the relationship is for the benefit of the patient, not to provide the practitioner with stories for their book and thereby personal aggrandisement or money making.

The Code also says (p. 6 under the heading Professional Values and Qualities at [c]):

Practitioners must be ethical and trustworthy. Patients trust practitioners because they believe that, in addition to being competent, practitioners will not take advantage of them and will display qualities such as integrity, truthfulness, dependability and compassion. Patients also rely on practitioners to protect their confidentiality.

Writing their stories in a book would, I suggest, be taking advantage of the patients and is not protecting their confidentiality.

In an earlier post – Posting on social media by police – and others (February 2, 2019) I reported on the ‘Intention-to-Tweet Decision Matrix’ developed by Aidan Baron and Ruth Townsend (‘Live tweeting by ambulance services: a growing concern’ ((2017) Vol 9 No 7 Journal of Paramedic Practice 282-286).  Although intended for a different publication it asks questions relevant to anyone thinking of writing a book, in particular ‘why is the book needed?’  Is it educational (eg a textbook to train future paramedics) or mere voyeurism or titillation?  Applying the same criteria to book publishing as well as tweeting (or is it ‘X’ing’) would be a useful guide to potential authors.

Ways to avoid the issue is to either get the patient’s consent or create fictional stories that can be used to make the point.  Perhaps no-one was crushed by an elephant at the zoo but crushed by something else somewhere else, and the story is an amalgam of a number of incidents to make whatever point needs to be made?

Conclusion

I think a good guide is the attitude of the professional journals. If the manuscript would not pass their test where publication is for a select audience and there is, at least prima facie, a useful educational purpose to be served, then they should not pass the test for publication to the world at large. And if publishers don’t apply those tests, practitioners should.  Failure to properly protect the patient’s confidence could lead to disciplinary and legal proceedings. 

That is not to say that any of the authors mentioned above have done the wrong thing. For all I know they may well have obtained the necessary consents, or the stories told may be fictitious accounts all be it based on real experiences, written to communicate the experience of the practitioner but without reference to any actual patient.

This blog is made possible with generous financial support from (in alphabetical order) the Australasian College of Paramedicine, the Australian Paramedics Association (NSW), the Australian Paramedics Association (Qld), Natural Hazards Research Australia, NSW Rural Fire Service Association and the NSW SES Volunteers Association. I am responsible for the content in this post including any errors or omissions. Any opinions expressed are mine, and do not necessarily reflect the opinion or understanding of the donors.

This blog is a general discussion of legal principles only.  It is not legal advice. Do not rely on the information here to make decisions regarding your legal position or to make decisions that affect your legal rights or responsibilities. For advice on your particular circumstances always consult an admitted legal practitioner in your state or territory.