Measuring equality can be difficult, especially when there is a lack of suitable data available, but it makes a difference. If a thing is worth measuring then it is worth measuring well – but even approximate indications of inequality can be useful in drawing public attention to injustices, making marginalised groups more visible and challenging policy assumptions. In a newly published article in Evidence & Policy, we argue that public investments in measuring inequalities have a social value that can’t be measured by technical perfection alone. Imperfect statistics sometimes have strong policy effects!
‘Everyone’s a patient’ is a refrain occasionally heard from professional health policy actors dismissive of health service user evidence; they argue that their own lived experience of a visit to the doctor’s gives them sufficient authority. The fallacy of this is suggested by an eminent psychiatrist’s astonishment at his treatment when hospitalised with a complex leg fracture. A fleeting association with primary care does not equate with the expertise developed by those with conditions with no quick fix – chronic conditions and disabilities. The much-discussed PACE trial shows how political tensions can arise from a disconnect between researchers who make flawed assumptions and those they seek to help.
So how can we ensure the ‘technical precision and expressive function’ of evidence meet the diverse needs, theoretical and ideological assumptions and priorities of the range of policy actors? How can we prevent procedural values-based decisions driven by political contingencies, drawing selectively on evidence, or the lack of representation or partial representation of disability diversity within evidence and policy?
Seventeen years ago, Diana Rose wrote that in mental health, user involvement was becoming ‘a technology of legitimation’ for reinforcing established powers. Seventeen years later, in examining some of the circuits and processors, Mazanderani and colleagues reveal how complex this ‘technology’ or machinery has become, and is still becoming. As though opening the doors of the machine room, the authors offer us a wealth of important insights and ideas. I’d like to share some thoughts on just a couple of them here.
How are you doing? You told me how you could not stop binging on COVID-19 news. So, I am sending you something different: “Risk, uncertainty and medical practice: changes in the medical professions following disaster” by Sudeepa Abeysinghe et al. I can see you wince, complaining that a paper written about a nuclear disaster that happened 9 years earlier has nothing to do with what we are undergoing now (note: this piece was written in March-April 2020). Well, I would argue that the paper is quite relevant today because it gives us perspective on how the medical professionals stretched their roles/responsibilities in times of crisis. You told me of your deep respect for these professionals, and I believe this paper will increase your understanding of their challenges and even deepen your appreciation.
Recently I came upon this photo in a post in Twitter. I have seen it before. It’s a powerful image by Sir Luke Fields. The child and doctor at the centre, in the glow of the lamp. The child ill and exhausted. The doctor earnestly observing. Watching. Sitting. Waiting. Thinking. Previously, and again this time, I absorb this painting as a statement on the medical profession. A reminder of the solemness of their work. The gravity of life and death. The role of the family in the background, secondary and in the dark.
But then I was challenged to really look at the image. The Dad wasn’t simply in the background, he was standing in the shadows, he was stoic, he was purposefully and intently studying the doctor for signals. Only after considerable prodding, did I notice Dad’s hand comforting his distraught wife. The Mum collapsed in prayer, or distress, or both. Dad’s hand gently on her shoulder, reassuring her, or maybe channelling his energy into her prayer. Her faith. Their hope.