Coburn, Josie; (2023) Targeting diseases with research: benefits, limitations, cross-disease spillovers and researchers' perspectives. Doctoral thesis (Ph.D), University of Sussex.

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Abstract

Following years of science policy predominantly focused on scientific productivity, there has been increasing interest in the direction of research and in targeting research towards addressing societal needs. Focusing on biomedical research, this thesis examines the benefits and limitations of targeting diseases with research. In paper 1, we examine the extreme case of neglected disease research. We identify some unintended consequences of targeting research towards neglected diseases including undermining health system strengthening and research capacity building efforts. We argue that choices in research targeting are entangled with issues of research evaluation, contributing to a “tragedy of the evaluation commons”, in which the kinds of evaluation required to appraise broad and diverse research efforts are seldom undertaken because they are deemed too costly and complex, while more limited evaluations based on disease-based impacts contribute to the formulation of narrow disease-based research projects. Paper 2 presents scientometric evidence on changes in research direction measured in terms of “cross-disease spillovers” – instances where investment targeted towards one disease contributes to research on other diseases – for four diseases. We find that cross-disease spillovers are relatively frequent; that there are different patterns for different diseases, with more frequent and bigger spillovers for diseases that are more prevalent in high-income countries; and that spillovers may relate to features of the research, such as basic science, capabilities, infrastructure, instrumentation and methods. In paper 3, we investigate why research changes direction by analysing qualitative data from 21 hour-long semi-structured interviews with researchers working in different research environments. Changes in research direction stem from a variety of factors including influences related to timeframes (during a project, between projects or over longer timeframes), motivations (planned or accidental, based on serendipity or failures), features of the research content (e.g. instrumentation) and features of the research environment (e.g. funding). Collectively, these papers contribute to the theoretical understanding of the factors which influence research changing direction, and on the desirability and feasibility of targeting research towards addressing societal needs more broadly. Methodologically, we develop a novel scientometric method for estimating and comparing changes in the direction of biomedical research. Empirically, we contribute four detailed disease-based case studies on how and why research changes direction in between grant funding and publication of results. Understanding the benefits and limitations of targeting diseases with research in these ways will help research organisations, funders and policymakers to design and implement more appropriate research funding and evaluation instruments.

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