Abstract
There are divergent views among scholars and policymakers about the nature of permissible evidence for policymaking. It is often not feasible to construct a policy system exclusively based on objective research findings, particularly for rare diseases where conventionally accepted evidence remains a rarity. Evolutionary theories in such cases offer an overarching framework to represent the various heterodox understandings of what constitutes evidence and how evidence-based policies can be formulated under knowledge uncertainty. We conduct an empirical investigation of India’s rare disease policymaking endeavour in evolutionary perspective. The existing rare diseases policy architecture in India, in our view, reflects a ‘rationalistic’ framework. It intends to act only on ‘hard evidence’ to make, what may be called, an optimum decision, rather than initiating a ‘good enough’ policy decision based on existing (limited, soft) evidence and improving it incrementally through learning and trial-and-error. Our findings suggest that in the presence of ‘evidentiary vacuum’ and knowledge uncertainty, broadening the contours of epistemic communities, to include ‘lived experiences’ of the ‘lay’-stakeholders, can be effective in formulating an adaptive policy framework, which would ‘learn’ to better fit with the dynamic environment through inclusive deliberations, and trial-and-error.
Highlights
The relationship between research and policymaking is a well-established topic of inquiry among policy studies scholars
Amidst a growing interest in evidence-based policy, we find divergent views on what constitutes permissible evidence, the process of evidence generation, and its uptake in policy decision making (Sanderson, 2002)
Source Our compilation For many countries in Europe, we rely on Rare Disease plans and strategies in European countries, which can be accessed on https://www.eurordis.org/content/rare-diseaseplan-and-strategies-european-countries
Summary
The relationship between research and policymaking is a well-established topic of inquiry among policy studies scholars. Even decisions based on hard evidence are shaped by competing ideas and interests (Young et al, 2002) These arguments, in our view, provide compelling reasons to analyze the process of evidence-based policymaking from an evolutionary perspective. Epistemic communities have so far been studied from the perspective of analyzing their role in policy learning and policy transfer The process of their formation and the way they shape evidence in a field where hard evidence is not easy to come by, have not found a place in the relevant scholarship so far in developing countries. We observe that the institutionalization of patient support and advocacy groups in policy decision-making remains inadequate in these countries By epistemic community, these countries predominantly mean the views of the formal experts.
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