Paul Hodgkin: The dogs that don’t bark are the most difficult to hear

For at least the last 70 years patients have been regularly gathered in crowded outpatient clinics and left to sit in silence. Decade after decade, country after country, health systems around the world have ignored the massive potential for patients to learn from each other. Forget the rhetoric about listening and engaging patients. Just look at all those crowded outpatient waiting rooms—still silent, still full of the lonely crowds that medicine invariably seems to create whenever it brings patients together. A case of dogs not barking if ever there was.

Ask clinicians and managers why they fail to use the opportunities to promote mutual support between patients with the same condition and you get all the usual suspects—too busy, not enough money, “they” won’t let us. [i] There is enough truth in these to construct plausible local excuses, but not enough to explain such a massive, worldwide, black hole. To understand why these blindingly obvious opportunities have been so systematically missed we need to look to the deeper psychological compacts that lie at the heart of medicine.

In the original Sherlock Holmes story the dog didn’t bark for the very good reason that the villain of the piece was its owner. And so it is with health systems—the villain is us, the clinicians and managers. It is us who, in our hearts, don’t want those patients to begin barking, to engage with each other, to hunt in packs. This is not because we are bad. It is because medicine is structured around a parent-child relationship. We “care for” patients, we “look after them” we “nurture” them back to health. They are weak whilst we are strong. At one level this is the heart of great care, an appropriate response to the vulnerability, pain, and pathology of others. But it also fills a deep need in us. As doctors, as nurses, as healthcare systems, we need to feel powerful because all that blood and pus and shit, all that madness, ambiguity, uncertainty, all that pathology, and above everything, all that death—makes us fearful that we will fail. Our own deep, dark secret is that we are more invested in being the parent than we care to admit. And of course we genuinely want to protect patients from getting hold of the wrong end of the stick or barking up the wrong tree—but actually talking with each other? Why ever would we want to facilitate that?

And then bingo! Along comes social media. Suddenly the dogs are barking and the patients are talking together anyway, about all kinds of stuff—including us.

“Technology proposes the architecture of our intimacies.” [ii] So says Sherry Turkle, a doyen of web culture: Twitter constrains our intimacies to 140 characters and the formatting of your electronic record intimately structures your practice. Crucially the architecture of the web and the tools that have enabled patients to finally talk with each other, are profoundly flat and non-hierarchical. Just look around—from social media, to crowd funding, to Airbnb, the architecture of the web continually proposes peer-to-peer relationships.

So medicine is caught at a unique juncture. Its technology, its history, and its own psychological defenses continually propose a set of intimacies based around parent-child relationships. Meanwhile the rest of the world—including off-duty clinicians—is hurtling towards a world of adult-adult, networked individualism. [iii]

Patients, of course, move on the tides of fear between wanting to be adult and wanting to be looked after and it is part of every clinician’s work to accommodate these changes of register. But doing this in a world where patients can pass comment on you, view your Facebook page, and Tweet you directly is hard because these peer-to-peer technologies propose an intimacy between participants that does violence to the hierarchies that still inhere in healthcare. But this shift from hierarchy is the future. Driven by these wider forces adult-adult relationships are becoming the default setting in healthcare, leaving parent-child as something we toggle into only at times of crisis.

[i] As my colleague Ben Metz and I have done recently as part of a research project into Online Health Communities funded by the Health Foundation and Guys & Thomas’ Charity.

[ii] Turkle S Alone Together: Why we expect more from technology and less from each other. Basic Books; Feb. 2013, ISBN-10: 0465031463

[iii] Raine L, Wellman B, Networked. The new social operating system. MIT Press; 2014, ISBN-10: 0262526166

Paul Hodgkin worked in general practice until 2011 and in 2005 founded Patient Opinion, a not-for-profit website where patients, service users, carers, and staff can share their stories of care across the UK. 

Competing interests: I founded the Patient Opinion website and still have shares in this not-for-profit social enterprise. I am a trustee of Asthma UK.