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?
This special issue examines the relationship between disability, evidence, and policy. It considers the extent to which the demand for, production, and use of evidence in policy and practice takes account of disability perspectives. For example, disabled populations, already vulnerable, have been made more so throughout the COVID-19 pandemic, which highlights their disenfranchisement and marginalisation in relevant policy decisions. This outcome has sparked calls to action by disability advocacy groups and coalitions in the Global North and the Global South. These current events and responses provide a window of opportunity to reassess and change some of the entrenched systems that consistently exclude vulnerable groups such as disabled populations.