Practicing Ethics and Ethics Praxis

Purpose - This paper demonstrates the limited efficacy procedural ethics has for qualitative research. Ethics committee’s instructions have a short shelf life given the research question qualitative researchers create is volatile; that is, likely to change due to the inductive, emergent, informant-led nature of qualitative research. Design - This article draws on extensive literature to examine the void between the original research design and the messy reality experienced in the field. We focus on how researchers can practice ethically by recognizing the need for agile and responsive ethics praxis in their work. Findings - This practice describes the researcher, recognizing the initial support from an ethics committee and its limitations, but as the research gets underway assuming full responsibility for ethical considerations that emerge in the field. Practical implications - Researchers’ responsibilities entail recognising the dual faces of confidentiality; distinguishing external confidentiality from internal confidentiality. Other responsibilities in post procedural ethics include recognising and addressing what Guillemin and Gillam label big ethical moments and addressing these in different ways. Originality/value - At times, participants and researchers’ ethical protections are insufficient to deal with the unforeseen, requiring on the spot ethical reasoning and decision-making. Being prepared for and capable of ethics praxis is therefore crucial. Researchers should also assume they may find themselves at personal risk (physically, emotionally, reputationally) and in anticipation of that they should create a safety plan. Most importantly, the changeable nature of practicing ethical research requires researchers to establish a reference group that can provide impartial advice and guidance enhancing the ethical practice

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

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

Public Involvement in Health Priority Setting: Future Challenges for Policy, Research and Society

AbstractPurposeThe article reflects on the findings of this special issue and discusses the futurechallenges for policy, research and society. The findings suggest that challengesemerge as a result of legitimacy deficits of both consensus and contestatory modes of public involvement in health priority setting.Design/Methodology/ApproachThe article draws on the discussions and findings presented in this special issue. It seeks to bring the country experiences and case studies together to draw conclusions for policy, research and society.FindingsAt least two recurring themes emerge. An underlying theme is the importance, but also the challenge, of establishing legitimacy in health priority setting. The country experiences suggest that we understand very little about the conditions under which representative, or authentic, participation generates legitimacy and under which it will be regarded as insufficient. A second observation is that public participation takes a variety of forms that depend on the opportunity structures in a given national context. Given this variety the conceptualization of public participation needs to be expanded to account for the many forms of public participation.Originality/ValueThe article concludes that the challenges of public involvement are closely linked to the question of how legitimate processes and decisions can be generated in priority setting. This suggests that future research must focus more narrowly on conditions under which legitimacy are generated in order to expand our understanding of public involvement in health prioritization.KeywordsPublic participation, priority setting, legitimacy, authentic representation, equitable health coverageArticle ClassificationGeneral Revie

Introduction: priority setting, equitable access and public involvement in health care

Purpose – The purpose of this paper is to introduce the special issue on improving equitable access to health care through increased public and patient involvement (PPI) in prioritization decisions by discussing the conceptualization, scope and rationales of PPI in priority setting that inform the special issue. Design/methodology/approach – The paper employs a mixed-methods approach in that it provides a literature review and a conceptual discussion of the common themes emerging in the field of PPI and health priority setting. Findings – The special issue focuses on public participation that is collective in character, in the sense that the participation relates to a social, not personal, decision and is relevant to whole groups of people and not single individuals. It is aimed at influencing a decision on public policy or legal rules. The rationales for public participation can be found in democratic theory, especially as they relate to the social and political values of legitimacy and representation. Originality/value – The paper builds on previous definitions of public participation by underlining its collective character. In doing so, it develops the work by Parry, Moyser and Day by arguing that, in light of the empirical evidence presented in this issue, public participatory activities such as protests and demonstrations should no longer be labelled unconventional, but should instead be labelled as “contestatory participation”. This is to better reflect a situation in which these modes of participation have become more conventional in many parts of the world

Patterns of public participation: opportunity structures and mobilization from a cross-national perspective

Purpose: The paper summarizes data from twelve countries, chosen to exhibit wide variation, on the role and place of public participation in the setting of priorities. It seeks to exhibit cross-national patterns in respect of public participation, linking those differences to institutional features of the countries concerned. Design/methodology/approach: The approach is an example of case-orientated qualitative assessment of participation practices. It derives its data from the presentation of country case studies by experts on each system. The country cases are located within the historical development of democracy in each country. Findings: Patterns of participation are widely variable. Participation that is effective through routinized institutional processes appears to be inversely related to contestatory participation that uses political mobilization to challenge the legitimacy of the priority setting process. No system has resolved the conceptual ambiguities that are implicit in the idea of public participation. Originality/value: The paper draws on a unique collection of country case studies in participatory practice in prioritization, supplementing existing published sources. In showing that contestatory participation plays an important role in a sub-set of these countries it makes an important contribution to the field because it broadens the debate about public participation in priority setting beyond the use of minipublics and the observation of public representatives on decision-making bodies

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

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

Leading the way with a health research repository

Leading the way with a health research repositor

Developing ethical frameworks in animal-assisted social service delivery in Aotearoa New Zealand

Whilst social services have traditionally operated from a humanist informed practice perspective, social service interventions are increasingly including non-human animals as a key part of rehabilitation, therapy and assistance activities. While there is extensive literature documenting the human-animal bond and the benefit to social service clients of such animal-assisted interventions, there is an increasing call in the literature for the development of an ethical framework to guide such activities. At present, there are fragmented and ad-hoc ethical guidelines that consider the welfare of the service and assistance animals. This lack of an ethical code/s of conduct for practitioners working with non-human animals can lead to the possibility of harm occurring to service and assistance animals in social service activities. This paper reports on interviews with practitioners in Aotearoa New Zealand who use non-human animals to assist them in their practice to contribute to a discussion to develop a more informed framework for ethical conduct with service and assistance animals that considers the realities of practitioners situations as well as the needs of non-human animals