Enacting internal coherence: as a path to quality in qualitative inquiry

In this chapter, I am going to make an argument about how to judge quality and do quality in qualitative research, I\u27m a little trepidatious taking this on: it\u27s an old subject and many great authors have written on it elegantly (just a few examples: Angen, 2000; Barbour, 2001; Flick, 2007; Mason, 2002; Seale, 1999). People come to blows over the quality of qualitative research, perhaps because it goes to the question of whether it\u27s worth doing research at all. Questions about quality are a big deal

Overdiagnosis, ethics, and trolley problems: why factors other than outcomes matter-an essay

In February 2014, the non-governmental Swiss Medical Board recommended that mammography programmes in Switzerland may eventually be closed down because they might not deliver more benefits than harms. In the resulting uproar the board was accused of being unethical. Controversy about mammography has persisted in the UK, US, Canada, and elsewhere, and disputes about overdiagnosis exist in prostate cancer, chronic kidney disease, attention-deficit/hyperactivity disorder (ADHD), and many other conditions. People concerned about overdiagnosis are compelled by evidence of harms outweighing benefits. But not everyone is equally compelled. This may be because of disagreements over the evidence, conflicts of interest, or cognitive biases. Another possible cause of disagreement is that some people may not think that benefits and harms are the most important consideration. This contrast, between people who think outcomes are what matters most and people who disagree, is central to the discipline of ethics. It is a crucial difference between utilitarian ethicists and non-consequentialist ethicists. Broadly, utilitarians think that, given several options, we should choose the one that produces the best overall outcome (the most utility among the whole group of affected people), ensuring that each person counts equally in the calculation. Non-consequentialists don\u27t consider outcomes to be so important: other ethical concerns, such as rights, duties, or respect for people\u27s dignity or autonomy, matter more

What is overdiagnosis and why should we take it seriously in cancer screening?

Overdiagnosis occurs in a population when conditions are diagnosed correctly but the diagnosis produces an unfavourable balance between benefits and harms. In cancer screening, overdiagnosed cancers are those that did not need to be found because they would not have produced symptoms or led to premature death. These overdiagnosed cancers can be distinguished from false positives, which occur when an initial screening test suggests that a person is at high risk but follow-up testing shows them to be at normal risk. The cancers most likely to be overdiagnosed through screening are those of the prostate, thyroid, breast and lung. Overdiagnosis in cancer screening arises largely from the paradoxical problem that screening is most likely to find the slow-growing or dormant cancers that are least likely to harm us, and less likely to find the aggressive, fast-growing cancers that cause cancer mortality. This central paradox has become clearer over recent decades. The more overdiagnosis is produced by a screening program, the less likely the program is to serve its ultimate goal of reducing illness and premature death from cancer. Thus, it is vital that health professionals and researchers continue an open, scientific inquiry into the extent and consequences of overdiagnosis, and devise appropriate responses to it

Primary goals, information-giving and men\u27s understanding: A qualitative study of Australian and UK doctors\u27 varied communication about PSA screening

Objectives: (1) To characterise variation in general practitioners’ (GPs’) accounts of communicating with men about prostate cancer screening using the prostate-specific antigen (PSA) test, (2) to characterise GPs’ reasons for communicating as they do and (3) to explain why and under what conditions GP communication approaches vary. Study design and setting: A grounded theory study. We interviewed 69 GPs consulting in primary care practices in Australia (n=40) and the UK (n=29). Results: GPs explained their communication practices in relation to their primary goals. In Australia, three different communication goals were reported: to encourage asymptomatic men to either have a PSA test, or not test, or alternatively, to support men to make their own decision. As well as having different primary goals, GPs aimed to provide different information (from comprehensive to strongly filtered) and to support men to develop different kinds of understanding, from population-level to ‘gist’ understanding. Taking into account these three dimensions (goals, information, understanding) and building on Entwistle et al’s Consider an Offer framework, we derived four overarching approaches to communication: Be screened, Do not be screened, Analyse and choose, and As you wish. We also describe ways in which situational and relational factors influenced GPs’ preferred communication approach. Conclusion: GPs’ reported approach to communicating about prostate cancer screening varies according to three dimensions—their primary goal, information provision preference and understanding sought—and in response to specific practice situations. If GP communication about PSA screening is to become more standardized in Australia, it is likely that each of these dimensions will require attention in policy and practice support interventions

An empirical study of the ‘underscreened’ in organised cervical screening: experts focus on increasing opportunity as a way of reducing differences in screening rates

Sample interview question route. (PDF 63 kb

Chapter 22 FEMINIST BIOETHICS AND EMPIRICAL RESEARCH

The Routledge Handbook of Feminist Bioethics is an outstanding resource for anyone with an interest in feminist bioethics, with chapters covering topics from justice and power to the climate crisis. Comprising forty-two chapters by emerging and established scholars, the volume is divided into six parts: I Foundations of feminist bioethics II Identity and identifications III Science, technology and research IV Health and social care V Reproduction and making families VI Widening the scope of feminist bioethics The volume is essential reading for anyone with an interest in bioethics or feminist philosophy, and will prove an invaluable resource for scholars, teachers and advanced students

Framing overdiagnosis in breast screening: a qualitative study with Australian experts

Background: The purpose of this study was to identify how the topic of overdiagnosis in breast cancer screening is framed by experts and to clarify differences and similarities within these frames in terms of problems, causes, values and solutions. Methods: We used a qualitative methodology using interviews with breast screening experts across Australia and applying framing theory to map and analyse their views about overdiagnosis. We interviewed 33 breast screening experts who influence the public and/or policy makers via one or more of: public or academic commentary; senior service management; government advisory bodies; professional committees; non-government/consumer organisations. Experts were currently or previously working in breast screening in a variety of roles including clinical practice, research, service provision and policy, consumer representation and advocacy. Results: Each expert used one or more of six frames to conceptualise overdiagnosis in breast screening. Frames are described as: Overdiagnosis is harming women; Stop squabbling in public; Don’t hide the problem from women; We need to know the overdiagnosis rate; Balancing harms and benefits is a personal matter; and The problem is overtreatment. Each frame contains a different but internally coherent account of what the problem is, the causes and solutions, and a moral evaluation. Some of the frames are at least partly commensurable with each other; others are strongly incommensurable. Conclusions: Experts have very different ways of framing overdiagnosis in breast screening. This variation may contribute to the ongoing controversy in this topic. The concept of experts using different frames when thinking and talking about overdiagnosis might be a useful tool for those who are trying to negotiate the complexity of expert disagreement in order to participate in decisions about screening

The role of communication in breast cancer screening: A qualitative study with Australian experts

Background: One well-accepted strategy for optimising outcomes in mammographic breast cancer screening is to improve communication with women about screening. It is not always clear, however, what it is that communication should be expected to achieve, and why or how this is so. We investigated Australian experts’ opinions on breast screening communication. Our research questions were: 1 What are the views of Australian experts about communicating with consumers on breast screening? 2 How do experts reason about this topic? Methods: We used a qualitative methodology, interviewing 33 breast screening experts across Australia with recognisable influence in the Australian mammographic breast cancer screening setting. We used purposive and theoretical sampling to identify experts from different professional roles (including clinicians, program managers, policy makers, advocates and researchers) with a range of opinions about communication in breast screening. Results: Experts discussed the topic of communication with consumers by focusing on two main questions: how strongly to guide consumers’ breast cancer screening choices, and what to communicate about overdiagnosis. Each expert adopted one of three approaches to consumer communication depending on their views about these topics. We labelled these approaches: Be screened; Be screened and here’s why; Screening is available please consider whether it’s right for you. There was a similar level of support for all three approaches. Experts’ reasoning was grounded in how they conceived of and prioritised their underlying values including: delivering benefits, avoiding harms, delivering more benefits than harms, respecting autonomy and transparency. Conclusions: There is disagreement between experts regarding communication with breast screening consumers. Our study provides some insights into this persisting lack of consensus, highlighting the different meanings that experts give to values, and different ways that values are prioritised. We suggest that explicit discussion about ethical values might help to focus thinking, clarify concepts and promote consensus in policy around communication with consumers. More specifically, we suggest that decision-makers who are considering policy on screening communication should begin with identifying and agreeing on the specific values to be prioritised and use this to guide them in establishing what the communication aims will be and which communication strategy will achieve those aims

Writing the risk of cancer: Cancer risk in public policy

In this paper we examine how cancer risk is written in cancer policy documents from the English speaking OECD nations. We offer an audit of the multiple ways in which cancer risk is conceptualised and presented in health policy and professional contexts with the long term aim of comparing this with lay conceptualisations. Our study sampled cancer policy documents produced by six nations, the World Health Organization and the International Union for Cancer Control since 2000 and analysed them iteratively through questions and codes. Whilst the documents contained a comprehensive range of concepts and locations for cancer risk, our analysis found two predominant representations: firstly, well established metaphors that depict cancer as uniformly dreadful and life threatening; and secondly, through a concentration on five behavioural risk factors (tobacco smoking, drinking alcohol, inadequate nutrition, sun exposure and physical inactivity) and one bodily state (overweight). We discuss the implications of this dual focus and of other tensions within ideas about cancer risk that we identified for risk communication

Values in breast cancer screening: an empirical study with Australian experts

Objective To explore what Australian experts value in breast screening, how these values are conceptualised and prioritised, and how they inform experts\u27 reasoning and judgement about the Australian breast-screening programme. Design Qualitative study based on interviews with experts. Participants 33 experts, including clinicians, programme managers, policymakers, advocates and researchers selected for their recognisable influence in the Australian breast-screening setting. Setting Australian breast-screening policy, practice and research settings. Results Experts expressed 2 types of values: ethical values (about what was good, important or right) and epistemological values (about how evidence should be created and used). Ethical values included delivering benefit, avoiding harm, promoting autonomy, fairness, cost effectiveness, accountability, professionalism and transparency. Epistemological values informed experts\u27 arguments about prioritising and evaluating evidence methodology, source population and professional interests. Some values were conceptualised differently by experts: for example, delivering benefit could mean reducing breast cancer mortality, reducing all-cause mortality, reducing mortality in younger women, reducing need for aggressive treatment, and/or reassuring women they were cancer free. When values came into conflict, experts prioritised them differently: for example, when experts perceived a conflict between delivering benefits and promoting autonomy, there were differences in which value was prioritised. We explain the complexity of the relationship between held values and experts\u27 overall views on breast cancer screening. Conclusions Experts\u27 positions in breast screening are influenced by evidence and a wide range of ethical and epistemological values. We conclude that discussions about values should be a regular part of breast-screening review in order to build understanding between those who hold different positions, and provide a mechanism for responding to these differences