Evidentiary vacuum, epistemic communities and rare disease policymaking in India: an evolutionary policy perspective

Shyamjeet Maniram Yadav, Saradindu Bhaduri*

*Corresponding author for this work

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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.

Original languageEnglish
Pages (from-to)133-152
Number of pages20
JournalJournal of Bioeconomics
Volume24
Issue number2
DOIs
Publication statusPublished - 27 Nov 2021

Bibliographical note

Funding Information:
We are thankful to Ulrich Witt for his appreciation and support, Alok Bhattacharya and Sudha Bhattacharya for introducing us to the Indian network of rare diseases researchers and policymakers. Kapil Patil made important observations on an initial draft. We thank all patient advocacy groups for their willingness to share their rich insights from otherwise painful journeys. The critical yet constructive comments from the two anonymous reviewers have helped us improve the draft immensely. The fieldwork for the study was carried out with doctoral scholarship received by the first author from the Indian Council of Medical Research (ICMR).

Publisher Copyright:
© 2021, The Author(s).

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