Symposium editorial: A Public Health Ethics Approach to Non-Communicable Diseases

Although bioethicists have written about public health problems for many decades (e.g., Faden and Faden 1978; Bayer and Moreno 1986), public health ethics as a distinct field is not much older than the Journal of Bioethical Inquiry (JBI) itself. Around 2000, there was a rapid increase in the number of ethicists writing about public health problems (e.g., Kass 2001; Upshur 2002) as well as engagement of public health practitioners with ethical dilemmas and questions (e.g., Thomas et al. 2002; Jennings et al. 2003). Public health ethics has tended to focus on communicable diseases, pandemics, contagion, and crises. This is not surprising given the acute problems they raise, not least questions regarding coercion and harm to others. However, in public health policy and practice, there is increasing attention to the significance of non-communicable diseases. This concern was sufficient to stimulate the second only United Nations high-level meeting on a health issue in the history of that organization, held September 2011 in New York (United Nations Secretary-General 2011). This meeting produced official acknowledgement and agreement between member states that worldwide changes in prevalence of non-communicable diseases such as diabetes, cardiovascular disease, cancer, and respiratory illnesses are associated with particular kinds of development and that prevention of these diseases is an important global political and economic challenge. The symposium in this issue of the JBI engages with the relationship between public health ethics and non-communicable diseases

Doctors’ approaches to PSA testing and overdiagnosis in primary healthcare: a qualitative study.

Objectives: (1) To explain general practitioners’ (GPs’) approaches to prostate-specific antigen (PSA) testing and overdiagnosis; (2) to explain how GPs reason about their PSA testing routines and (3) to explain how these routines influence GPs’ personal experience as clinicians. Setting: Primary care practices in Australia including men’s health clinics and rural practices with variable access to urology services. Partic ipants: 32 urban and rural GPs within Australia. We included GPs of varying ages, gender (11 female), clinical experience and patient populations. All GPs interested in participating in the study were included. Primary and secondary outcome measure(s): Data were analysed using grounded theory methods to determine how and why GPs provide (or do not provide) PSA testing to their asymptomatic male patients. Results: We observed patterned variation in GP practice, and identified four heuristics to describe GP preference for, and approaches to, PSA testing and overdiagnosis: (1) GPs who prioritised avoiding underdiagnosis, (2) GPs who weighed underdiagnosis and overdiagnosis case by case, (3) GPs who prioritised avoiding overdiagnosis and (4) GPs who did not engage with overdiagnosis at all. The heuristics guided GPs’ Routine Practice (usual testing, communication and responses to patient request). The heuristics also reflected GPs’ different Practice Rationales (drawing on experience, medicolegal obligations, guidelines and evidence) and produced different Practice Outcomes (GPs’ experiences of the consequences of their PSA testing decisions). Some of these heuristics were more responsive to patient preferences than others. Conclus ions: Variation in GPs’ PSA testing practices is strongly related to their approach to overdiagnosis and underdiagnosis of prostate cancer. Men receive very different care depending on their GP’s reasoning and practice preferences. Future policy to address overdiagnosis will be more likely to succeed if it responds to these patterned variationsThe project was funded by NHMRC grant 1023197. Stacy Carter is supported by NHMRC Career Development Fellowship 1032963

Which public and why deliberate? – A scoping review of public deliberation in public health and health policy research.

Deliberative methods are of increasing interest to public health researchers and policymakers. We systematically searched the peer-reviewed literature to identify public health and health policy research involving deliberative methods and report how deliberative methods have been used. We applied a taxonomy developed with reference to health policy and science and technology studies literatures to distinguish how deliberative methods engage different publics: citizens (ordinary people who are unfamiliar with the issues), consumers (those with relevant personal experience e.g. of illness) and advocates (those with technical expertise or partisan interests). We searched four databases for empirical studies in English published 1996–2013. This identified 78 articles reporting on 62 distinct events from the UK, USA, Canada, Australasia, Europe, Israel, Asia and Africa. Ten different types of deliberative techniques were used to represent and capture the interests and preferences of different types of public. Citizens were typically directed to consider community interests and were treated as a resource to increase democratic legitimacy. Citizens were preferred in methodological studies (those focused on understanding the techniques). Consumers were directed to focus on personal preferences; thus convened not as a source of policy decisions, but of knowledge about what those affected by the issue would accept. Advocates—who are most commonly used as expert witnesses in juries—were sometimes engaged to deliberate with consumers or citizens. This almost always occurred in projects directly linked to policy processes. This suggests health policymakers may value deliberative methods as a way of understanding disagreement between perspectives. Overall however, the ‘type’ of public sought was often not explicit, and their role not specified. This review provides new insight into the heterogeneity and rising popularity of deliberative methods, and indicates a need for greater clarity regarding both the constitution of publics and the relative usefulness of different deliberative techniques. Keywords Deliberative methods; Public health; Health policy; Public participation; Policy makin

All care, but whose responsibility? Community juries reason about expert and patient responsibilities in prostate-specific antigen screening for prostate cancer

General practitioners have implicitly been given responsibility for guiding men’s decisions about prostate-specific antigen–based screening for prostate cancer, but patients’ expectations of the bounds of this responsibility remain unclear. We sought to explore how well-informed members of the public allocate responsibilities in prostate-specific antigen screening decision-making. In 2014, we convened two Community juries in Sydney, Australia, to address questions related to the content and timing of information provision and respective roles of patients and general practitioners in screening decisions. Participants in the first jury were of mixed gender and of all ages (n = 15); the participants in the second jury were all male and of screening age (n = 12). Both juries were presented with balanced factual evidence on the harms and benefits of prostate-specific antigen screening and expert perspectives on ethico-legal aspects of consent in medical practice. In their deliberations, jurors agreed that general practitioners should take responsibility for informing men of the options, risks and benefits of prostate-specific antigen testing, but arrived at different positions on whether or not general practitioners should also guide screening decisions. Jurors also disagreed on how much and when general practitioners should provide detailed information about biopsies and treatments. These responses suggest that for prostate-specific antigen testing, there is a public expectation that both the allocation of responsibility between general practitioners and their male patients, and the level of information provided will be tailored to individual men. In the presence of expert uncertainty, a well-informed public may have reason to embrace or resist shared decision-making processes

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 study was funded by the Australian National Health and Medical Research Council (project grant 1023197). LP is supported by a National Health and Medical Research Council PhD scholarship (1038517). SC is supported by a National Health and Medical Research Council Career Development Fellowship (1032963)

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. Keywords: Breast cancer; Mass screening; Communication; Decision making; Ethics; Qualitative research; MammographyThe study was funded by the Australian National Health and Medical Research Council (project grant 1023197). LP is supported by a National Health and Medical Research Council PhD scholarship (1038517). SMC is supported by a National Health and Medical Research Council Career Development Fellowship (1032963)

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. Keywords: Breast cancer; Mass screening; Communication; Decision making; Ethics; Qualitative research; MammographyThe study was funded by the Australian National Health and Medical Research Council (project grant 1023197). LP is supported by a National Health and Medical Research Council PhD scholarship (1038517). SMC is supported by a National Health and Medical Research Council Career Development Fellowship (1032963)

Doctors\u27 perspectives on PSA testing illuminate established differences in prostate cancer screening rates between Australia and the UK: A qualitative study

Objectives: To examine how general practitioners (GPs) in the UK and GPs in Australia explain their prostate-specific antigen (PSA) testing practices and to illuminate how these explanations are similar and how they are different. Design: A grounded theory study. Setting: Primary care practices in Australia and the UK. Participants: 69 GPs in Australia (n=40) and the UK (n=29). We included GPs of varying ages, sex, clinical experience and patient populations. All GPs interested in participating in the study were included. Results: GPs’ accounts revealed fundamental differences in whether and how prostate cancer screening occurred in their practice and in the broader context within which they operate. The history of prostate screening policy, organisational structures and funding models appeared to drive more prostate screening in Australia and less in the UK. In Australia, screening processes and decisions were mostly at the discretion of individual clinicians, and varied considerably, whereas the accounts of UK GPs clearly reflected a consistent, organisationally embedded approach based on local evidence-based recommendations to discourage screening. Conclusions: The GP accounts suggested that healthcare systems, including historical and current organisational and funding structures and rules, collectively contribute to how and why clinicians use the PSA test and play a significant role in creating the mindlines that GPs employ in their clinic. Australia’s recently released consensus guidelines may support more streamlined and consistent care. However, if GP mindlines and thus routine practice in Australia are to shift, to ultimately reduce unnecessary or harmful prostate screening, it is likely that other important drivers at all levels of the screening process will need to be addressed

Patients' perspectives of long-term follow-up for localised cutaneous melanoma

Background Little is known about the value of long-term follow-up for localised cutaneous melanoma from the patients' perspective. This study aimed to explore the benefits and potential downsides of follow-up; feelings about changes to frequency of follow-up, and patient-centred recommendations for improving follow-up care. Methods Qualitative analysis of 29 in-depth interviews conducted with Australian patients undergoing long-term follow-up after surgical treatment of stage I/II melanoma. Results Patient-perceived benefits of follow-up included reassurance, early detection of new melanomas and non-melanoma skin cancers, education about skin self-examination, the opportunity to ask questions, and reinforcement of ‘sunsafe’ behaviours. Downsides included anxiety leading up to and during follow-up visits; inconvenience of travel to attend visits; and lost work time. Patients varied in their engagement with skin self-examination, and their views on multiple skin excisions, but highly valued access to specialists for unscheduled visits. Most patients felt their follow-up intervals could be extended to 12 months if recommended by their clinician. Conclusion The benefits and potential downsides of follow-up should be discussed with patients when deciding on a melanoma follow-up plan to achieve a balance between inducing additional patient anxiety and providing reassurance. Follow-up intervals of 12 months appear to be acceptable to patients