When the numbers do not add up: Health research and health disparities in Aotearoa New Zealand

Abstract

Decisions about health policy and services are, in part, informed by research. In this thesis, I argue health research and the systems which generate and then use it, fail to consider marginalised populations. As a consequence, decision-makers in service and policy settings lack appropriate information to address health inequity and in fact contribute to it through their regard for these marginalised populations. To support this argument, I draw on a range of empirical work. I review public records for evidence of marginalised groups’ inclusion in research and the activities that use research to decide policy or service provision. I then examine the role of ethics committees in reviewing justice and the systems and structures that researchers who work with marginalised populations navigate. Using this information, I then look at reasons and potential solutions to this injustice. I scrutinised public records for representation of three case populations considered marginalised in Aotearoa New Zealand (NZ) in evidence-generating activities and evidence-using activities to establish a lack of inclusion. Based on the data available, representation was found to be lacking. In NZ, approved ethics committees have the task of ethically assessing health research that has the potential to create evidence. The National Ethical Advisory Committee (NEAC) of NZ sets out what justice entails in the review and practice of research. I surveyed committee members to understand their views on justice requirements and their review of them. The survey response rate was too low to be representative but provided starting points for discussion. Using an institutional ethnographic method, I analysed interviews with senior researchers (informants) who work with marginalised populations alongside institutional texts to understand informants work and how it sits within the larger system of health research. I theorise that the marketisation of the university and health system within a neoliberal knowledge economy, along with an emphasis on the biomedical, direct research practices in ways counter-intuitive and counter-productive to those working with marginalised groups. Not only that but these research systems create what Miranda Fricker calls an ‘epistemic injustice’ by their privileging of certain kinds of research work over others. Moving from the empirical, the thread of epistemic injustice is then taken up and elaborated. Epistemologies in health research– their foundations, the information they provide, and their limitations are laid out. I argue that the privileging of one kind of knowing is in part based on our established theory of justice narrowing our perspective (especially within a neoliberal environment). Then, I put forward the claim that a shift in justice theory to a Capabilities Approach (CA) that reframes the questions that we need to address and therefore the methods needed to address them, might be more effective in acknowledging health inequity and creating a fairer health research environment. Sen’s CA takes as its foundation the equalising of people’s capabilities to achieve their preferred functionings, recognising the diversity of these functionings and does this on the basis of public discourse and decision-making. This approach to justice in health research requires a more inclusive and patient-centered framework than the current model which in practice is often disease-centric and generalising. I argue a CA framework is likely to not only change the informational environment required to make decisions but liable to improve inequity because it more explicitly asks us to notice it.