Adjusting the focus: A public health ethics approach to data research

This paper contends that a research ethics approach to the regulation of health data research is unhelpful in the era of population‐level research and big data because it results in a primary focus on consent (meta‐, broad, dynamic and/or specific consent). Two recent guidelines – the 2016 WMA Declaration of Taipei on ethical considerations regarding health databases and biobanks and the revised CIOMS International ethical guidelines for health‐related research involving humans – both focus on the growing reliance on health data for research. But as research ethics documents, they remain (to varying degrees) focused on consent and individual control of data use. Many current and future uses of health data make individual consent impractical, if not impossible. Many of the risks of secondary data use apply to communities and stakeholders rather than individual data subjects. Shifting from a research ethics perspective to a public health lens brings a different set of issues into view: how are the benefits and burdens of data use distributed, how can data research empower communities, who has legitimate decision‐making capacity? I propose that a public health ethics framework – based on public benefit, proportionality, equity, trust and accountability – provides more appropriate tools for assessing the ethical uses of health data. The main advantage of a public health approach for data research is that it is more likely to foster debate about power, justice and equity and to highlight the complexity of deciding when data use is in the public interest.     

Health ethics and Indigenous ethnocide

In colonial societies such as Canada the implications of colonialism and ethnocide (or cultural genocide) for ethical decision‐making are ill‐understood yet have profound implications in health ethics and other spheres. They combine to shape racism in health care in ways, sometimes obvious, more often subtle, that are inadequately understood and often wholly unnoticed. Along with overt experiences of interpersonal racism, Indigenous people with health care needs are confronted by systemic racism in the shaping of institutional structures, hospital policies and in resource allocation decisions. Above all, racism is a function of state law – of the unilateral imposition of the settler society law on Indigenous communities. Indeed, the laws, including health laws, are social determinants of the ill‐health of Indigenous peoples. This article describes the problem of Indigenous ethnocide and explores its ethical implications. It thereby problematizes the role of law in health ethics.     

Balancing competing interests and obligations in mental health‐care practice and policy

It is often challenging for mental health‐care providers and health organizations to perform their various roles and to meet their varied obligations. In complex mental health‐care circumstances the concurrent application of relevant ethical principles and values often leads to the emergence of completing obligations that need to be carefully weighed and balanced in the making of care‐related decisions. Although some clinical circumstances, such as those potentially triggering the duty to warn, are adequately guided by existing rules based on legal precedents, there is a gap in decision‐making support in other mental health‐care domains. This article proposes that a set of targeted, decision‐making approaches be developed to assist in the handling of specific, challenging circumstances. By way of illustration, two novel approaches are introduced; that is, choosing to work within a moral relational space of optimal therapeutic engagement (at the micro level of clinical practice), and the use of a health policy development approach that instantiates deliberative engagement (at the meso and macro levels of health organization).     

[Re]considering Respect for Persons in a Globalizing World

Contemporary clinical ethics was founded on principlism, and the four principles: respect for autonomy, nonmaleficence, beneficence and justice, remain dominant in medical ethics discourse and practice. These principles are held to be expansive enough to provide the basis for the ethical practice of medicine across cultures. Although principlism remains subject to critique and revision, the four‐principle model continues to be taught and applied across the world. As the practice of medicine globalizes, it remains critical to examine the extent to which both the four‐principle framework, and individual principles among the four, suffice patients and practitioners in different social and cultural contexts. Using the four‐principle model we analyze two accounts of surrogate decision making – one from the developed and one from the developing world – in which the clinician undertakes medical decision‐making with apparently little input from the patient and/or family. The purpose of this analysis is to highlight challenges in assessing ethical behaviour according to the principlist model. We next describe cultural expectations and mores that inform both patient and clinician behaviors in these scenarios in order to argue that the principle of respect for persons informed by culture‐specific ideas of personhood may offer an improved ethical construct for analyzing and guiding medical practice in a globalized and plural world.     

Gezamenlijke besluitvorming zorgt voor een betere toepassing van evidence-based medicine in de geriatrische patiënt

Evidence based medicine (EBM) is the integration of the best research evidence, clinical expertise and patient values in the decision making process for patient care. However, elderly people are often excluded from participating in scientific studies and they often have multiple morbidities, which complicates the application of EBM. Shared decision making (SDM), a process where clinicians and patients share the best available evidence when faced with the task of making decisions, and where patients are supported to consider options, to achieve appropriate treatment can help to shape EBM for this group of patients.In this article, we provide tools for finding relevant literature for the geriatric patient population and for shaping the SDM process to achieve personalized care.     

WPA guidance on mental health and mental health care in migrants

The purpose of this guidance is to review currently available evidence on mental health problems in migrants and to present advice to clinicians and policy makers on how to provide migrants with appropriate and accessible mental health services. The three phases of the process of migration and the relevant implications for mental health are outlined, as well as the specific problems of groups such as women, children and adolescents, the elderly, refugees and asylum seekers, and lesbian, gay, bisexual and transgender individuals. The concepts of cultural bereavement, cultural identity and cultural congruity are discussed. The epidemiology of mental disorders in migrants is described. A series of recommendations to policy makers, service providers and clinicians aimed to improve mental health care in migrants are provided, covering the special needs of migrants concerning pharmacotherapies and psychotherapies.     

Psychiatric ethics

Psychiatric ethics spans several overlapping domains, including the guidelines for ethical research in psychiatry, the professional ethics required in the practice of psychiatry, and a broader set of moral and ethical problems and dilemmas distinctive to, or at least magnified by, the mental health care setting. Reviewed here are selected issues arising in the last two domains, some seemingly inevitable components of mental disorder and its cultural history and others resultant from recent changes and discoveries. Even as science explains and demystifies mental disorder, it is concluded, new ethical problems will continue to arise in psychiatry and certain recalcitrant problems will likely persist.     

Predicting spatial patterns of plant species richness: a comparison of direct macroecological and species stacking modelling approaches

Aim This study compares the direct, macroecological approach (MEM) for modelling species richness (SR) with the more recent approach of stacking predictions from individual species distributions (S‐SDM). We implemented both approaches on the same dataset and discuss their respective theoretical assumptions, strengths and drawbacks. We also tested how both approaches performed in reproducing observed patterns of SR along an elevational gradient. Location Two study areas in the Alps of Switzerland. Methods We implemented MEM by relating the species counts to environmental predictors with statistical models, assuming a Poisson distribution. S‐SDM was implemented by modelling each species distribution individually and then stacking the obtained prediction maps in three different ways – summing binary predictions, summing random draws of binomial trials and summing predicted probabilities – to obtain a final species count. Results The direct MEM approach yields nearly unbiased predictions centred around the observed mean values, but with a lower correlation between predictions and observations, than that achieved by the S‐SDM approaches. This method also cannot provide any information on species identity and, thus, community composition. It does, however, accurately reproduce the hump‐shaped pattern of SR observed along the elevational gradient. The S‐SDM approach summing binary maps can predict individual species and thus communities, but tends to overpredict SR. The two other S‐SDM approaches – the summed binomial trials based on predicted probabilities and summed predicted probabilities – do not overpredict richness, but they predict many competing end points of assembly or they lose the individual species predictions, respectively. Furthermore, all S‐SDM approaches fail to appropriately reproduce the observed hump‐shaped patterns of SR along the elevational gradient. Main conclusions Macroecological approach and S‐SDM have complementary strengths. We suggest that both could be used in combination to obtain better SR predictions by following the suggestion of constraining S‐SDM by MEM predictions.     

Measuring and improving the quality of mental health care: a global perspective

Mental disorders are common worldwide, yet the quality of care for these disorders has not increased to the same extent as that for physical conditions. In this paper, we present a framework for promoting quality measurement as a tool for improving quality of mental health care. We identify key barriers to this effort, including lack of standardized information technology‐based data sources, limited scientific evidence for mental health quality measures, lack of provider training and support, and cultural barriers to integrating mental health care within general health environments. We describe several innovations that are underway worldwide which can mitigate these barriers. Based on these experiences, we offer several recommendations for improving quality of mental health care. Health care payers and providers will need a portfolio of validated measures of patient‐centered outcomes across a spectrum of conditions. Common data elements will have to be developed and embedded within existing electronic health records and other information technology tools. Mental health outcomes will need to be assessed more routinely, and measurement‐based care should become part of the overall culture of the mental health care system. Health care systems will need a valid way to stratify quality measures, in order to address potential gaps among subpopulations and identify groups in most need of quality improvement. Much more attention should be devoted to workforce training in and capacity for quality improvement. The field of mental health quality improvement is a team sport, requiring coordination across different providers, involvement of consumer advocates, and leveraging of resources and incentives from health care payers and systems.     

The evidence‐based group‐level symptom‐reduction model as the organizing principle for mental health care: time for change?

The content and organization of mental health care have been heavily influenced by the view that mental difficulties come as diagnosable disorders that can be treated by specialist practitioners who apply evidence‐based practice (EBP) guidelines of symptom reduction at the group level. However, the EBP symptom‐reduction model is under pressure, as it may be disconnected from what patients need, ignores evidence of the trans‐syndromal nature of mental difficulties, overestimates the contribution of the technical aspects of treatment compared to the relational and ritual components of care, and underestimates the lack of EBP group‐to‐individual generalizability. A growing body of knowledge indicates that mental illnesses are seldom “cured” and are better framed as vulnerabilities. Important gains in well‐being can be achieved when individuals learn to live with mental vulnerabilities through a slow process of strengthening resilience in the social and existential domains. In this paper, we examine what a mental health service would look like if the above factors were taken into account. The mental health service of the 21st century may be best conceived of as a small‐scale healing community fostering connectedness and strengthening resilience in learning to live with mental vulnerability, complemented by a limited number of regional facilities. Peer support, organized at the level of a recovery college, may form the backbone of the community. Treatments should be aimed at trans‐syndromal symptom reduction, tailored to serve the higher‐order process of existential recovery and social participation, and applied by professionals who have been trained to collaborate, embrace idiography and maximize effects mediated by therapeutic relationship and the healing effects of ritualized care interactions. Finally, integration with a public mental health system of e‐communities providing information, peer and citizen support and a range of user‐rated self‐management tools may help bridge the gap between the high prevalence of common mental disorder and the relatively low capacity of any mental health service.     

Clinical utility of ICD‐11 diagnostic guidelines for high‐burden mental disorders: results from mental health settings in 13 countries

In this paper we report the clinical utility of the diagnostic guidelines for ICD‐11 mental, behavioural and neurodevelopmental disorders as assessed by 339 clinicians in 1,806 patients in 28 mental health settings in 13 countries. Clinician raters applied the guidelines for schizophrenia and other primary psychotic disorders, mood disorders (depressive and bipolar disorders), anxiety and fear‐related disorders, and disorders specifically associated with stress. Clinician ratings of the clinical utility of the proposed ICD‐11 diagnostic guidelines were very positive overall. The guidelines were perceived as easy to use, corresponding accurately to patients’ presentations (i.e., goodness of fit), clear and understandable, providing an appropriate level of detail, taking about the same or less time than clinicians’ usual practice, and providing useful guidance about distinguishing disorder from normality and from other disorders. Clinicians evaluated the guidelines as less useful for treatment selection and assessing prognosis than for communicating with other health professionals, though the former ratings were still positive overall. Field studies that assess perceived clinical utility of the proposed ICD‐11 diagnostic guidelines among their intended users have very important implications. Classification is the interface between health encounters and health information; if clinicians do not find that a new diagnostic system provides clinically useful information, they are unlikely to apply it consistently and faithfully. This would have a major impact on the validity of aggregated health encounter data used for health policy and decision making. Overall, the results of this study provide considerable reason to be optimistic about the perceived clinical utility of the ICD‐11 among global clinicians.     

The ICD‐11 developmental field study of reliability of diagnoses of high‐burden mental disorders: results among adult patients in mental health settings of 13 countries

Reliable, clinically useful, and globally applicable diagnostic classification of mental disorders is an essential foundation for global mental health. The World Health Organization (WHO) is nearing completion of the 11th revision of the International Classification of Diseases and Related Health Problems (ICD‐11). The present study assessed inter‐diagnostician reliability of mental disorders accounting for the greatest proportion of global disease burden and the highest levels of service utilization – schizophrenia and other primary psychotic disorders, mood disorders, anxiety and fear‐related disorders, and disorders specifically associated with stress – among adult patients presenting for treatment at 28 participating centers in 13 countries. A concurrent joint‐rater design was used, focusing specifically on whether two clinicians, relying on the same clinical information, agreed on the diagnosis when separately applying the ICD‐11 diagnostic guidelines. A total of 1,806 patients were assessed by 339 clinicians in the local language. Intraclass kappa coefficients for diagnoses weighted by site and study prevalence ranged from 0.45 (dysthymic disorder) to 0.88 (social anxiety disorder) and would be considered moderate to almost perfect for all diagnoses. Overall, the reliability of the ICD‐11 diagnostic guidelines was superior to that previously reported for equivalent ICD‐10 guidelines. These data provide support for the suitability of the ICD‐11 diagnostic guidelines for implementation at a global level. The findings will inform further revision of the ICD‐11 diagnostic guidelines prior to their publication and the development of programs to support professional training and implementation of the ICD‐11 by WHO member states.     

Uses and abuses of recovery: implementing recovery‐oriented practices in mental health systems

An understanding of recovery as a personal and subjective experience has emerged within mental health systems. This meaning of recovery now underpins mental health policy in many countries. Developing a focus on this type of recovery will involve transformation within mental health systems. Human systems do not easily transform. In this paper, we identify seven mis‐uses (“abuses”) of the concept of recovery: recovery is the latest model; recovery does not apply to “my” patients; services can make people recover through effective treatment; compulsory detention and treatment aid recovery; a recovery orientation means closing services; recovery is about making people independent and normal; and contributing to society happens only after the person is recovered. We then identify ten empirically‐validated interventions which support recovery, by targeting key recovery processes of connectedness, hope, identity, meaning and empowerment (the CHIME framework). The ten interventions are peer support workers, advance directives, wellness recovery action planning, illness management and recovery, REFOCUS, strengths model, recovery colleges or recovery education programs, individual placement and support, supported housing, and mental health trialogues. Finally, three scientific challenges are identified: broadening cultural understandings of recovery, implementing organizational transformation, and promoting citizenship.     

‘Bioethical Realism’: A Framework for Implementing Universal Research Ethics

Implementation of existing ethical guidelines for international collaborative medical and health research is still largely controversial in sub‐Saharan Africa for two major reasons: One, they are seen as foreign and allegedly inconsistent with what has been described as an ‘African worldview’, hence, demand for their strict implementations reeks of ‘bioethical imperialism’. Two, they have other discernible inadequacies – lack of sufficient detail, apparent as well as real ambiguities, vagueness and contradictions. Similar charges exist(ed) in other non‐Western societies. Consequently, these guidelines have been correctly judged as an inadequate response to the complex and ever shifting dilemmas met by researchers and research regulators in the field. This paper proposes a framework for effective implementation of existing guidelines without much worry about bioethical imperialism and other inadequacies. This framework is proposed using an analogy of Legal Realism, specifically its key assertions on how, in reality, judicial systems operate using general legal rules to settle specific cases. Legal realists assert that in judicial decision‐making, general legal rules do not totally dictate court decisions in specific cases. This analogy is used to coin a new term, ‘Bioethical Realism.’ The framework suggests that local Research Ethics Committees ought to be construed as analogues of judicial courts with the resulting implications. Consequently, just like legal rules are general rules that do not always dictate court decisions, similarly international bioethical guidelines are general ethical rules that should not always dictate local RECs’ decisions and such decisions (ought to) enjoy considerable immunity from outsiders.     

Managing ethical challenges around misattributed parentage within the clinical context: Insights from an African moral theory

This study argues the thesis that a set of guidelines ‐ firmly rooted in a particular interpretation of African moral theory, specifically, Ubuntu – will do a better job than current medical ethics frameworks, in addressing ethical challenges around misattributed parentage within the clinical context. Incidental information such as information with significant personal/health implications raises unique challenges for medical professionals. For example, withholding information of misattributed paternity accidentally discovered in clinical interactions may be seen by a patient as a violation of his/her right‐to‐know. Contrarily, disclosure where a patient has not requested information – or where establishing paternity is not the purpose of clinical visit/interaction – may be taken by the patient as a violation of his/her right ‘not‐to‐know’. Resolving these challenges remain a herculean task. African moral theory contains an under‐emphasized value for addressing such ethical challenges around misattributed parentage in the field of transplant. I seek to contribute this knowledge; and enhance clinician‐patient relationship. This study builds off three completed systematic reviews, which aimed to answer the following questions: “what are the ethical challenges regarding information health professionals face within the clinical contest?” and “what core aspects (or common themes) of Ubuntu can be identified in existing literature describing the same?” In this present study, I applied the definition of Ubuntu which captures the core aspects of the theory in ethical literature on the same, to address ethical issues around unsought information of misattributed parentage in the field of transplant.     

A phenomenological account of users' experiences of assertive community treatment

Assertive community treatment (ACT) is a widely propagated team approach to community mental health care that 'assertively' engages a subgroup of individuals with severe mental illness who continuously disengage from mental health services. It involves a number of interested parties – including clients, carers, clinicians and managers. Each operates according to perceived ethical principles related to their values, mores and principles. ACT condenses a dilemma that is common in psychiatry. ACT proffers social control whilst simultaneously holding therapeutic aspiration. The clients' perspective of this dilemma was studied in interviews with 12 clients using the 'grounded theory' approach. Results suggest that clients' disengagement is as much a historical and cultural phenomenon as a result of lack of insight. Many clients had experienced rejection of early help–seeking behaviour and all had been subject to coercive interventions. These coercive interventions were experienced as an attack on identity. All felt that their voice had not been listened to in previous interactions with psychiatric services. Consequentially the clients had an increased level of arousal around issues of power, which needs to be incorporated when examining the ethics of community psychiatry. Traditional notions of the difference between persuasion and coercion – for example – may need to be adapted for this client group. Results are compared with the provider perspective. We conclude that the perspectives differ on two key dimensions. Such an empirical approach to examining psychiatric ethics may ensure that we incorporate the subjectivities of various interested parties in the clinical decision–making process.     

Limitations to the Use of Species-Distribution Models for Environmental-Impact Assessments in the Amazon

Species-distribution models (SDM) are tools with potential to inform environmental-impact studies (EIA). However, they are not always appropriate and may result in improper and expensive mitigation and compensation if their limitations are not understood by decision makers. Here, we examine the use of SDM for frogs that were used in impact assessment using data obtained from the EIA of a hydroelectric project located in the Amazon Basin in Brazil. The results show that lack of knowledge of species distributions limits the appropriate use of SDM in the Amazon region for most target species. Because most of these targets are newly described and their distributions poorly known, data about their distributions are insufficient to be effectively used in SDM. Surveys that are mandatory for the EIA are often conducted only near the area under assessment, and so models must extrapolate well beyond the sampled area to inform decisions made at much larger spatial scales, such as defining areas to be used to offset the negative effects of the projects. Using distributions of better-known species in simulations, we show that geographical-extrapolations based on limited information of species ranges often lead to spurious results. We conclude that the use of SDM as evidence to support project-licensing decisions in the Amazon requires much greater area sampling for impact studies, or, alternatively, integrated and comparative survey strategies, to improve biodiversity sampling. When more detailed distribution information is unavailable, SDM will produce results that generate uncertain and untestable decisions regarding impact assessment. In many cases, SDM is unlikely to be better than the use of expert opinion.     

Treatment engagement of individuals experiencing mental illness: review and update

Individuals living with serious mental illness are often difficult to engage in ongoing treatment, with high dropout rates. Poor engagement may lead to worse clinical outcomes, with symptom relapse and rehospitalization. Numerous variables may affect level of treatment engagement, including therapeutic alliance, accessibility of care, and a client's trust that the treatment will address his/her own unique goals. As such, we have found that the concept of recovery‐oriented care, which prioritizes autonomy, empowerment and respect for the person receiving services, is a helpful framework in which to view tools and techniques to enhance treatment engagement. Specifically, person‐centered care, including shared decision making, is a treatment approach that focuses on an individual's unique goals and life circumstances. Use of person‐centered care in mental health treatment models has promising outcomes for engagement. Particular populations of people have historically been difficult to engage, such as young adults experiencing a first episode of psychosis, individuals with coexisting psychotic and substance use disorders, and those who are homeless. We review these populations and outline how various evidence‐based, recovery‐oriented treatment techniques have been shown to enhance engagement. Our review then turns to emerging treatment strategies that may improve engagement. We focus on use of electronics and Internet, involvement of peer providers in mental health treatment, and incorporation of the Cultural Formulation Interview to provide culturally competent, person‐centered care. Treatment engagement is complex and multifaceted, but optimizing recovery‐oriented skills and attitudes is essential in delivery of services to those with serious mental illness.     

Cultural Identity Among Afghan and Iraqi Traumatized Refugees: Towards a Conceptual Framework for Mental Health Care Professionals

Cultural identity in relation with mental health is of growing interest in the field of transcultural psychiatry. However, there is a need to clarify the concept of cultural identity in order to make it useful in clinical practice. The purpose of this study is to unravel the complexity and many layers of cultural identity, and to assess how stress and acculturation relate to (changes in) cultural identity. As part of a larger study about cultural identity, trauma, and mental health, 85 patients from Afghanistan and Iraq in treatment for trauma-related disorders were interviewed with a Brief Cultural Interview. The interviews were analysed through qualitative data analysis using the procedures of grounded theory. The analysis resulted in three domains of cultural identity: personal identity, ethnic identity and social identity. Within each domain relationships with stress and acculturation were identified. The results offer insight into the intensity of changes in cultural identity, caused by pre-and post-migration stressors and the process of acculturation. Based on the research findings recommendations are formulated to enhance the cultural competency of mental health workers.