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Abstract: This paper reports on a qualitative study examining everyday practices of healthy living (HL). Forty-four semi-structured interviews were undertaken with Canadian and UK citizens, aged 45 – 70, in April–May 2010. The research sits within the now substantial literature concerned with how health information is mediated, both by people and technologies, and employed in the context of ‘good’ health citizenship. Throughout this work, notions of ‘choice’ and ‘empowerment’ have been interrogated, theoretically and empirically, to reveal both the knowledge/power relationships integral to ‘informing’ processes and the shifting relationship between information and care in contemporary health encounters. In this paper, we analyse how people make sense of what it means to live healthily and how they know if they are doing so by focussing on three ways in which study participants become informed about healthy living: through their engagement with universal HL messages, through their own information searches, and through their attempts to measure their ‘healthiness’. Following critique of the “logic of choice” in contemporary healthcare, we understand healthy living as a “situation of choice” where complex problems are framed as simple matters of choice and where information and technologies are understood as neutral aids to decision-making in support of ‘correct’ choices. Our analysis builds on and extends Mol’s work by exploring how participants negotiate between this “logic of choice” and her alternative “logic of care” in their accounts of everyday HL informing practices and how the two logics “interfere” with one another. These accounts show resistance to the logic of choice through ‘calls for care’ but they also show clearly how the disciplining logic of choice works to (re)present such calls for care as failed attempts at healthy living, undermining the very practices the logic of choice seeks to encourage. [Copyright &y& Elsevier]

Abstract: This paper addresses three questions: What is the extent of clinical guideline utilization by decision-makers in provincial health ministries, regional health authorities and hospitals in Canada? Are there differences between these work settings in regard to the extent of clinical guideline utilization? What are the determinants of clinical guidelines utilization in health ministries, regional health authorities and hospitals? Based on a survey of 899 decision-makers from Canadian provincial health ministries, regional health authorities and hospitals, the results indicate that there are large differences between work settings in regard to clinical guideline utilization. Not surprisingly, work settings like hospitals rely more intensively on clinical guidelines than the other work settings (health ministries or agencies and regional health authorities). The results of the regression models indicate that cognitive factors, social factors, technological factors, organizational factors and individual attributes significantly predict the utilization of clinical practice guidelines by decision-makers. However, the results of the regression models also indicate that some factors that predict clinical guideline utilization by decision-makers in hospitals do not predict clinical guidelines utilization by decision-makers working in ministries or in regional health authorities. Therefore, these results suggest that customized interventions would be appropriate in order to efficiently increase the utilization of clinical practice guidelines in different work settings. The paper concludes with suggestions for future research. [Copyright &y& Elsevier]

Rationale Living with a chronic illness poses many challenges, especially during the adolescent stage of development. Few studies have explored young people’s experiences of talking about their illness and how they go about deciding if and when they should tell others about their condition. Objective Our study sought the perspectives of Canadian children and adolescents living with inflammatory bowel disease (IBD) to determine how they go about deciding if and when to tell others about their illness. Methods Twenty-five participants with IBD, ranging in age from 10 to 17 years old, were interviewed about their experiences. Results Our participants highlighted that they generally preferred to conceal their illness. However, when they did disclose, they drew on a diverse range of contextual factors such as their knowledge of the illness as well as the severity of their illness, to make the decision. They also highlighted that one of the main challenges they experience is dealing with negative reactions to the news of their illness. This paper presents a decision-making model describing how children decide whether to disclose or conceal their IBD. Conclusion Our study illustrates that for children and adolescents, managing others’ knowledge about their illness has important implications for illness identity management. We argue that knowledge of how children with IBD make disclosure decisions is an important part of understanding the social experience of having IBD, and in creating environments that allow them to adapt to life with IBD. Our study clearly highlights the need for specific programs to be implemented to normalize IBD and to create supportive environments for children and adolescents diagnosed with IBD. [ABSTRACT FROM AUTHOR]

Non-invasive prenatal testing (NIPT) using cell-free DNA (cfDNA) offers numerous benefits to pregnant women and their families. It also raises ethical, legal and social concerns regarding, for instance, the possible effects of a routinization of prenatal genetic testing on free and informed decision-making by prospective parents, and the role of the state in governing its use. Technological advances are allowing cfDNA analyses to detect an increasing number of genetic risks and conditions in the fetus, potentially further exacerbating such concerns. From May 2015 to December 2016, we conducted a three-round Policy Delphi study (N R1 = 61, N R2 = 58, N R3 = 47; overall retention rate = 77.0%) to explore the social acceptability (SA) of current and potential future uses of NIPT in Canada according to participants with relevant professional, research or advocacy expertise. Participants came from four groups: healthcare professionals (N R3 = 14), social sciences and humanities researchers (N R3 = 13), patients/disability rights advocates (N R3 = 14), and cultural/religious communities advocates (N R3 = 6). This paper presents SA criteria and contextual contingencies relevant to the assessment of NIPT's SA according to the group. It also reports what uses (conditions or motives) participants thought should be banned, permitted, publicly funded, or promoted as a public health strategy. According to them, conditions resulting in severe pain or early death, as well as trisomies (13, 18, 21) and sex chromosome abnormalities, should be covered by Canadian public health insurance. However, there was wide agreement that direct-to-consumer NIPT should be legally banned, and that testing for fetal sex for non-medical reasons using NIPT should be either proscribed or discouraged. In addition to identifying areas of consensus, our results point to disagreement regarding, for instance, the required level of governance of whole-genome sequencing and testing for late onset conditions with low penetrance. This study also provides a model for exploring the SA of emerging technologies using the Policy Delphi method. • NIPT's social acceptability in Canada is explored using a three-round Delphi method. • Social acceptability is associated with 12 criteria of variable relevance. • Social acceptability depends on conditions tested, governance decisions and context. • Salient ethical tensions between reproductive autonomy and regulation are discussed. • A four-dimension model is proposed to explore social acceptability with experts. [ABSTRACT FROM AUTHOR]

Abstract: A key objective of discrete choice experiments is to obtain sufficient quantity of high quality choice data to estimate choice models to be used to explore various policy/clinically relevant issues. This paper focuses on a relatively new form of choice experiment, ‘Best Worst Discrete Choice Experiments’ (BWDCEs) and their relevance to health research as a new way to meet such an objective. We explain what BWDCEs are, how and when to apply them and we present several analytical approaches to model the resulting data. We demonstrate this preference elicitation approach in an empirical application exploring preferences of 898 members of the general public in Edmonton and Calgary, Canada for treatment of cardiac arrest occurring in a public place and show the gains achieved compared to traditional analysis of first best data. We suggest that BWDCEs are a valuable way to investigate preferences in the health sector and discuss implications for task design, analysis and areas for future research. [Copyright &y& Elsevier]

Abstract: This paper reports on the design, implementation, and results of a structured public deliberation on human tissue biobanking conducted in Vancouver, Canada, in 2009. This study builds on previous work on the use of deliberative democratic principles and methods to engage publics on the social and ethical implications of human tissue biobanking. In a significant refinement of methods, we focus on providing public input to institutional practice and governance of biobanks using a tailored workbook structure to guide participants'' discussion. Our focus is on the local context and practices of a particular institution, the BC BioLibrary. However, elements of both the methodological innovations and the ethical guidance implied by our findings are generalisable for biobanking internationally. Recommendations from the deliberative forum include issues of informed consent, privacy protections, collection of biospecimens, governance of biobanks, and how to manage the process of introduction between biobanks and potential donors. Notable findings include public support for research use of anonymised un-consented tissue samples when these come from archived collections, but lack of support when they are collected prospectively. [Copyright &y& Elsevier]

Abstract: Around 25% of practicing physicians in Canada are graduates of medical schools outside of Canada. These physicians are more likely to be working in rural communities, and in particular account for more than half of new physicians starting practice in rural regions. The extent to which particular health regions and provinces are able to retain their physicians is crucial if shortages in the delivery of physician and surgeon services in both the short and longer terms are to be avoided. In this paper, we use data from the confidential master files of the Canadian Census over the years 1991–2006 to study the geographic mobility of immigrant and non-immigrant physicians who are already resident in Canada. We consider both inter- and intra-provincial migration, with a particular focus on migration to and from rural areas of Canada. We exploit the fact that it is possible to link individuals within families in the Census files in order to investigate the impact on the migration decision of the characteristics of a married physician’s spouse. Our results indicate that the magnitude of outflows is substantial and that the retention of immigrant physicians in rural areas and in some provinces will continue to be difficult. We find strong evidence that migration is a family decision, and spousal characteristics (education, age, years in Canada for immigrants) are important. As well, we find that large Canadian cities (mainly in Ontario) are the likely destination for the types of immigrant physicians typically able to be recruited to other areas, implying recruitment efforts of smaller provinces may have significant implications for the size of health care costs in larger provinces. [Copyright &y& Elsevier]

Abstract: This paper examines how orthopaedic surgeons skilfully design treatment recommendations to display awareness of what individual patients are anticipating or seeking, and suggests limits to those efforts. It adds leverage to our parallel work by demonstrating that even when surgeons incorporate considerations of recipient design to ‘fit’ recommendations to patients’ displayed orientations, an asymmetry between recommendations for vs. not for surgery remains: recommendations for surgery are generally proposed early, in relatively simple and unmitigated form, and as stand-alone options. In contrast, recommendations not for surgery tend to be significantly more complex: they are likely to be delayed, conveyed indirectly, mitigated and justified, and include other possible treatment options. These findings suggest a tension between surgeons’ efforts to design recommendations for specific recipients and an overarching institutional bias favoring surgery. Surgeons’ efforts to anticipate and respond to resistance to recommendations demonstrate a similar pattern: the methods used to counter patient resistance, and the sequential placement of those efforts, depends on whether the recommendation is for surgery or another treatment option. This work contributes to an understanding of treatment recommendations generally by showing how patients are co-implicated in their accomplishment: because surgeons incorporate considerations of recipient design in response to information provided explicitly or tacitly by patients, patients influence the rendering of recommendations from the beginning. [Copyright &y& Elsevier]

Abstract: Attempts to evaluate public consultations, participatory technology assessment, and deliberative democracy have typically considered impacts on either policy or participants. The determination of impacts on policy institutions has been limited due to the challenges of tracing effects through the policy process, or penetrating bureaucratic walls. This paper presents findings from a retrospective study exploring the institutional lessons learned from a 2001 Canadian national public consultation on xenotransplantation. The consultation was conducted through an arm’s-length process and involved the use of citizen juries in six regional sites. We conducted in-depth interviews of regulatory and policy actors who were engaged in early policy discussions and the consultation process. We reviewed evaluations of this process, both internal and external, which gave us richer insights into what institutional actors saw as the impacts of this consultative experience on their policy environment. Participants in our research identified a broader shift toward openness in policy culture which they linked specifically to the innovative consultation process employed for xenotransplantation. We argue that beyond input into policy decisions, a consultation may have an impact in terms of its contribution to overall shifts in institutional culture (related to institutional learning), such as an “opening” of technological decision processes to a broader range of actors, knowledge, and values. [Copyright &y& Elsevier]

Abstract: Accountability for reasonableness is an ethical framework for fair priority setting process. This framework has been used to evaluate fairness in several contexts, and a few studies have evaluated its acceptability to decision makers. However, no studies have compared the acceptability of the four conditions of the framework to decision makers across health systems and levels of priority setting. This paper reports the elements of fairness described by 184 decision makers involved in priority setting at the macro-, meso- and micro-levels of priority setting in the Canadian (Ontario), Norwegian and Ugandan health care systems and compares them against the four conditions of ‘Accountability for Reasonableness’ and across levels of decision making, and health care systems. Our respondents identified 23 elements of fair priority setting. Most of these (17) were well aligned with the four conditions of Accountability for Reasonableness; six were not. Comparisons across health care system and levels of decision making revealed that four elements (transparency, participatory and among the criteria—need based and objective) were common to all and the rest were common to only the health care systems (but not at all levels), or only the levels of decision making (but not to all health are systems). Perceptions varied remarkably across levels of decision making. The overlap between the elements of fairness found in this study and the conditions of Accountability for Reasonableness demonstrates that the four conditions are recognizable and applicable across health care systems and levels of decision making. However, the framework should be used with flexibility to allow for identification of elements and relevant explicit criteria (such as those identified in this study) – that may not directly fit under any of the four conditions. [Copyright &y& Elsevier]

Abstract: The Discrete Choice Experiment (DCE) has become increasingly popular as a method for eliciting patient or population preferences. If DCE estimates are to inform health policy, it is crucial that the answers they provide are valid. Convergent validity is tested in this paper by comparing the results of a DCE exercise with the answers obtained from direct, open-ended questions. The two methods are compared in terms of preferred attribute levels and willingness to pay (WTP) values. Face-to-face interviews were held with 292 women in Calgary, Canada. Similar values were found between the two methods with respect to preferred levels for two out of three of the attributes examined. The DCE predicted less well for levels outside the range than for levels inside the range reaffirming the importance of extensive piloting to ensure appropriate level range in DCEs. The mean WTP derived from the open-ended question was substantially lower than the mean derived from the DCE. However, the two sets of willingness to pay estimates were consistent with each other in that individuals who were willing to pay more in the open-ended question were also willing to pay more in the DCE. The difference in mean WTP values between the two approaches (direct versus DCE) demonstrates the importance of continuing research into the different biases present across elicitation methods. [Copyright &y& Elsevier]

Abstract: The fears and beliefs patients hold about invasive medical interventions may affect their perceptions about risk and subsequent decisions to undergo those procedures. Little is known about fears and beliefs in patients undergoing invasive cardiac procedures and their relationship to perceptions of risks. Using a grounded theory approach, 10 men and 10 women referred for their first cardiac catheterization (CATH) from referral centers in Ontario, Canada were interviewed to identify fears and beliefs related to the procedure. Overall, women expressed more fears than men. Fears for both groups arose from: (1) lack of control about (i) physical aspects and (ii) psychosocial aspects of the CATH; (2) an unknown future; and (3) possible medical complications. Beliefs related to health personnel involved in the CATH, the technology used during the CATH and personal coping mechanisms. Men were more inclined to believe in technology, which overrode concerns about the procedure. Participants viewed CATH as a routine and necessary step in determining their future. Patients imputed previously held fears and beliefs and formulated new ones regarding the CATH during the process of anticipating the procedure. They viewed themselves as passive participants and not as actively consenting to the CATH. This paper offers previously undocumented insights from patients regarding CATH and provides the basis for developing future investigations. [Copyright &y& Elsevier]