From Confidentiality

Smile! Just took your picture for my study

In the latest edition of The Lancet’s Global Health is a short piece entitled “Preserving dignity and anonymity at scientific conferences”. It encourages those working across the social sciences, health and development (research and practice) to consider the impact of both taking photos and films within our work – and in sharing those images at public events. It’s an excellent piece, and one that is well worth using in your own self-development or in wider teaching about presentation skills, safety and wellbeing, individual and community rights, and professional ethics.

It reminded me of a case study I’ve used in teaching many times, that I published in 2010 (then titled ‘Smile! You’re on my phone’s camera’). It’s based on a real story, but I deliberately altered identifying details. I developed it as a training activity for healthcare practitioners to consider some of the shifting boundaries that exist around mobile technology and our working practices. In an era where we’re eager to use new technologies to improve healthcare and health education there can also be hidden issues we’ve perhaps not focused on as much as we should.

See what you think about the case described below. What would you do if you were the healthcare practitioner, the patient, or the carer talked about in the story?

Darrell, a newly qualified physiotherapist was talking animatedly with his colleagues over lunch about a new patient Ketan, a six-year-old boy recovering from a car accident that had left him with severe leg injuries. ‘He’s amazing!’ enthused Darrell, explaining how Ketan was slowly learning to walk again, ‘here, let me show you’. Darrell produced his smartphone, and showed his colleagues a series of photographs. There was Ketan concentrating hard, frowning as he performed his exercises. Next a shot of the injured leg, followed by a beaming Ketan giving a gap-toothed grin and thumb’s up to the camera. Louise, one of Darrell’s co-workers was the only one to appear concerned. Raising her voice above the ‘isn’t he adorable?’ comments of her colleagues she asked ‘is it okay to take pictures like this?’ ‘Oh yes’ Darrell reassured her ‘I asked Ket’s mum and she said it was fine, in fact, here they are together’. A fourth photograph was shown, picturing a smiling Ketan seated on his mum’s lap, pointing at his leg, whilst she looked uncertainly into the camera.

Darrell’s case probably isn’t that unusual. With new technologies it’s now easier than ever to capture a memorable moment, and that includes colleagues, patients and their families. Darrell wasn’t using the images for research or training, he was inspired by Ketan and wanted to share that feeling with others. He genuinely meant no harm. Ketan was clearly happy to show off his ‘poorly pins’ as he and Darrell had come to name them. Ketan’s mum probably was happy that such an enthusiastic health professional admired her son enough to take his picture.

But would she have agreed so readily knowing Darrell intended to show the picture to his colleagues, friends, and relatives? Perhaps Ketan’s mum thought that Darrell’s photo taking was part of his job or her son’s recovery, so didn’t question it. Or maybe she felt unable to say no.

Consistently we ask patients to share their stories, lend us their images, and let us sample bits of their bodies. We use this to diagnose, help and treat patients, to teach medical students, or to make new discoveries in research. Patients can expect to be asked to share their histories, be photographed, filmed or audio taped. That doesn’t mean they always understand what they are consenting to, nor have control over how the information, images, or samples they provide will be used.

And outside of this process are the health care staff like Darrell with their own agendas. They collect images or stories to explain their work, to move others as they’ve been moved, or even to make themselves look good in front of friends and colleagues. Maybe like Darrell they show a picture of a cute case study, or perhaps regale squeamish friends down the pub with a story of a particularly gruesome illness or difficult patient. Shouldn’t we be training our staff to respect patient confidentiality and privacy? Or in criticising someone like Darrell are we stifling their skills, and denying them job satisfaction?

In an era where public access is greater than ever, where we’re used to seeing candid shots of celebrities, Darrell’s behaviour isn’t out of place. But in a hospital setting where his job is to provide care, is it appropriate? Ketan’s recovery made a remarkable story – but maybe it wasn’t Darrell’s to tell.

You can use this story in several ways. You can think about changing the dynamics – what happens if you alter the gender, age, status, or ethnicity of the protagonists in this case?

You can also consider how this kind of situation occurs in teaching settings, with students filming or photographing and sharing stories of classmates or lecturers. In research where participants or wider communities can be filmed or photographed. Or where films or images are collected during work in development or aid. Images certainly can be used to raise awareness, drive funding or explain complex issues more simply. Which may be essential in crisis situations.

When is it okay to share images? How can this be explained to those you’re filming or photographing? And what happens when you take a photo or a film with people you’re researching or treating but not at a point when you – or they – consider this to be a formal study or therapeutic situation.

Answers to these questions may seem obvious, but often they are not. We are so used to sharing images and posting status updates it may feel odd to not be able to take pictures of what you want, where you want, and share it how you want. Having a space to talk about when it is – and is not – okay to photograph or film. And noting different places where it might be okay or not to share images, and the consequences of doing so.

If you’ve got examples of good practice or templates for gaining consent or encouraging ethical and respectful practice I’d love to hear them in the comments. Conversely learning from where people have been filmed or photographed without full consent is also important to talk about, so long as we don’t reproduce any abuses or breach anonymity and confidentiality.