They discuss the problems with current representations of disability, recent examples of policy that has failed disabled people and the changes that could be made so people with disabilities can be better supported and allowed to participate in policy making.
Elizabeth C. Long, Rebecca L. Smith, Jennifer T. Scott, Brittany Gay, Cagla Giray, Shannon Guillot-Wright and Daniel M. Crowley
Want to conduct surveys with national-level policymakers about their research use, but not sure how? We at the Research-to-Policy Collaboration offer a new measurement protocol to understand the role of science in national-level policymaking and provide lessons we learned based on our experiences surveying congressional staff in the US.
Evaluations provide important information to improve public services, but only if they yield valid and reliable findings – so we believed for a long time. Evaluation communities have therefore established certain criteria that should define evaluation quality. Yet against prior studies on evaluation utilisation, we show that evaluation quality measured by the criteria is not necessarily associated with evaluation use, but rather linked to the perception of quality and impact of the evaluation. Evaluators should adjust their communications strategies accordingly.
A couple of years ago my (Widman’s) son – who is autistic – was going to Sweden to visit family. My nephew, who is deaf, rejected getting together with my son because, after all, my son is not fluent in sign language. My nephew felt that he and my son would not have much in common nor a way to communicate – although as young kids, they were close and found a way to communicate anyway. This caused me to think about what has been going on within the disability community, or more correctly, ‘communities’, and how it got to be so siloed.
Nowhere is disability more dichotomised than within the autistic community. We have folks who celebrate neurodiversity while others eschew it. Some insist on identity-first language while others insist upon person-first. There are those who are hoping for a cure (medical model) while others embrace their autism (cultural model). Autistic culture has become less unifying than factional. If we can’t agree on how to refer to ourselves (‘autistic’ or ‘with autism’), how can we agree on anything else? The feuding is often caustic.
The implementation of public policies is a process that is as complex as its formulation, especially when we set out to solve issues in communities whose codes and languages are not shared by policymakers.
For example, Brazil is a country of continental proportions. Its population and socio-political contexts are very diverse. In the 2010 census, 305 indigenous ethnicities were identified, ranging from peoples living under voluntary isolation to groups living in major cities, spread across the 27 Brazilian states. Such diversity engenders a multitude of viewpoints about socially relevant problems, which universal public policies cannot cover without proper adaptations.
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?
Efforts to advance evidence-based policy quickly recognise the need for ‘research brokers’ to take on the critical role of linking the separate worlds of research and policy. Research brokers work in a range of organisations to transform, translate and package complex research findings into ideas and formats that can be used by policymakers, as well as facilitate meetings and establish relationships between researchers and policymakers. These research brokers are typically engaged in shaping the policy agenda, identifying promising solutions and influencing policy decisions. Yet, we know little about who plays that role, nor how they think about the evidence-policy connection.
Of particular interest are advocates working in foundations, think tanks, associations, lobbying firms and non-profit organisations pursuing specific policy objectives. These advocates are well-positioned to serve as research brokers since they are actively involved in most policy formulation and implementation processes and policymakers often use them as an important source of information. Yet advocates are also participants in the policy process who work to advance their own positions and preferences (and those of employers/clients). Research dissemination is just one of many tools advocates use to advance their policy goals.
After a period in which the onward march of evidence-informed decision-making appeared to be faltering in countries such as the US and UK, the acute uncertainties of the COVID-19 pandemic have triggered a fresh explosion of engagement with evidence and policy interactions – from diverse disciplinary, sectoral and institutional perspectives.
Does scientifically-backed information capture the attention of policymakers? To test this, I conducted a field experiment embedded in a real-life advocacy initiative targeted to members of the European Parliament in April 2018. As described in my Evidence & Policy article, ‘The silver bullet reversed: the impact of empirical evidence on policymaker attention’, results indicate that ideas-based information, rather than empirical information, gathers more attention from policymakers. More precisely, it is the announcement of ideas rather the actual information which manages to capture policymaker interest. Crucially, these findings hold across political groups, policy support and gender.