Pathways: A guide for developing culturally safe and appropriate patient-reported outcome (PROMs) and experience measures (PREMs) with Indigenous peoples.

BACKGROUND: Members of the Indigenous Health Program, BC Children's and Women's Hospitals and the University of British Columbia embarked on a joint project to describe best practices to support the creation of patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs) with Indigenous peoples. METHODS: The project involved a review of previous research on patient-reported measures (surveys) that had been specifically developed for Indigenous populations. It also involved interviews with key stakeholders-Indigenous and non-Indigenous academic researchers, and Indigenous community leaders and community members. Themes from the interviews and the literature review were combined and synthesized into pathways/a framework for survey development. RESULTS: The pathways document consisted of 13 protocols and associated teachings for guiding processes and framing survey questions. These encompassed building relationships, community engagement and consultation, benefits to community, ceremony and storytelling, two-way learning, participatory content development, governance and accountability. Findings emphasized the criticality of Indigenous leadership in setting priorities for PROMs and PREMS and establishing relationships that honour Indigenous experiences through all phases of a study. Assessment of the framework's validity with select research participants and the Project Advisory Committee was positive. CONCLUSION: This is the first framework to guide development of PROMs and PREMs with Indigenous peoples and communities. It addresess both process and outcome and includes concrete steps that collaborators can take when establishing a partnership that is respectful and inclusive of Indigenous ways of knowing and being.

Addressing the need for Indigenous-specific PROMs and PREMS: A focus on methodology.

PURPOSE: Differences in Indigenous worldviews, practices and values highlight the need for Indigenous-specific health quality indicators, such as patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs). The purpose of this paper is to present our methodology, as part of a larger study that sought to develop a framework for creating Indigenous-specific PROMs and PREMs. METHODS: The research design was informed by Indigenous research methodology and a community-based participatory approach. It had three core components: (1) a literature exploration of existing Indigenous-specific PROMs and PREMs; (2) interviews with researchers with expertise in PROMs and PREMs developed for Indigenous populations and community leaders interested in using these Indigenous-informed evaluation tools; and (3) conversations with Indigenous community members about their experiences with health surveys. Interviews were audio-recorded and transcribed verbatim; transcripts were analyzed qualitatively using an inductive and deductive approach. Themes and sub-themes were identified to build a framework that honours Indigenous knowledges and ways of knowing. Results were validated with select research participants and the Project Advisory Committee. RESULTS: Findings demonstrate how relationship building is the necessary starting point for engagement when developing survey instruments with Indigenous peoples. Engagement requires respectful collaboration through all stages of the project from determining what questions are asked to how the information will be collected, interpreted, and managed. A relational stance requires responsibility to Indigenous communities and peoples that goes beyond research carried out using a western scientific lens. It means ensuring that the project is beneficial to the community and framing questions based on Indigenous knowledge, worldviews, and community involvement. CONCLUSIONS: This study employed a collaborative, participatory qualitative approach to develop a framework for creating PROMs and PREMs with Indigenous peoples. The methods described offer concrete examples of strategies that can be employed to support relationship-building and collaboration when developing Indigenous-specific survey instruments.

[Les inégalités dans l'accès aux soins du cancer au Canada: un point de vue éthique].

La capacité d'offrir des soins du cancer de qualité dépend en grande partie de l'accessibilité des services à ceux qui en ont besoin. Dans l'état actuel des choses, on constate des disparités en matière d'accès aux services de cancérologie au Canada, ce qui constitue un problème sur le plan de l'éthique. Le présent article fait ressortir les points de vue éthiques et stratégiques liés à l'équité dans l'accès aux soins du cancer au Canada. S'inspirant des principes de la bioéthique, soit la bénéficience, la non-maléficience et la justice, plusieurs stratégies sont recommandées pour améliorer l'accès aux soins du cancer au pays.

Inequities in access to cancer care in Canada: An ethical perspective.

The ability to provide quality cancer care largely depends on how accessible the services are to those in need. In the current state, disparities exist in access to Canadian cancer services, and this poses an ethical challenge. This article highlights ethical and strategic considerations related to equity in access to Canadian cancer care. Based on the principles of bioethics-beneficence, non-maleficence, and justice-various action strategies have been recommended in order to improve access to cancer care nationally.

Sustaining life or prolonging dying? Appropriate choice of conservative care for children in end-stage renal disease: an ethical framework.

Due to technological advances, an increasing number of infants and children are surviving with multi-organ system dysfunction, and some are reaching end-stage renal disease (ESRD). Many have quite limited life expectancies and may not be eligible for kidney transplantation but families request dialysis as alternative. In developed countries where resources are available there is often uncertainty by the medical team as to what should be done. After encountering several of these scenarios, we developed an ethical decision-making framework for the appropriate choice of conservative care or renal replacement therapy in infants and children with ESRD. The framework is a practical tool to help determine if the burdens of dialysis would outweigh the benefits for a particular patient and family. It is based on the four topics approach of medical considerations, quality-of-life determinants, patient and family preferences and contextual features tailored to pediatric ESRD. In this article we discuss the basis of the criteria, provide a practical framework to guide these difficult conversations, and illustrate use of the framework with a case example. While further research is needed, through this approach we hope to reduce the moral distress of care providers and staff as well as potential conflict with the family in these complex decision-making situations.

Not in isolation: how history can inform the debate on professionalization.

As ethics services have become more integrated into healthcare organizations, the controversy regarding the possible professionalization of healthcare ethics practices has re-emerged. Some of the debate focuses on whether healthcare ethics practice possesses the attributes of a 'true profession.' This study examines the history of the professions and the relevance of this historical material, as well as sociological insights, for contemporary concerns. It explores whether the mismatch between traditional models of professional knowledge and the knowledge foundation for healthcare ethics is at the core of these concerns. It also takes the position that given the role healthcare ethics plays in assisting patients, families, healthcare providers, and others with complex moral decisions it is important to work towards developing standards that can be used to guide and evaluate the work.

Paediatric physician-researchers: coping with tensions in dual accountability.

Potential conflicts between the roles of physicians and researchers have been described at the theoretical level in the bioethics literature (Czoli, et al., 2011). Physicians and researchers are generally in mutually distinct roles, responsible for patients and participants respectively. With increasing emphasis on integration of research into clinical settings, however, the role divide is sometimes unclear. Consequently, physician-researchers must consider and negotiate salient ethical differences between clinical- and research-based obligations (Miller et al, 1998). This paper explores the subjective experiences and perspectives of 30 physician-researchers working in three Canadian paediatric settings. Drawing on qualitative interviews, it identifies ethical challenges and strategies used by physician-researchers in managing dual roles. It considers whether competing obligations could have both positive and adverse consequences for both physician-researchers and patients. Finally, we discuss how empirical work, which explores the perspectives of those engaged in research and clinical practice, can lead the way to understanding and promoting best practice.

Accountability and pediatric physician-researchers: are theoretical models compatible with Canadian lived experience?

Physician-researchers are bound by professional obligations stemming from both the role of the physician and the role of the researcher. Currently, the dominant models for understanding the relationship between physician-researchers' clinical duties and research duties fit into three categories: the similarity position, the difference position and the middle ground. The law may be said to offer a fourth "model" that is independent from these three categories.These models frame the expectations placed upon physician-researchers by colleagues, regulators, patients and research participants. This paper examines the extent to which the data from semi-structured interviews with 30 physician-researchers at three major pediatric hospitals in Canada reflect these traditional models. It seeks to determine the extent to which existing models align with the described lived experience of the pediatric physician-researchers interviewed.Ultimately, we find that although some physician-researchers make references to something like the weak version of the similarity position, the pediatric-researchers interviewed in this study did not describe their dual roles in a way that tightly mirrors any of the existing theoretical frameworks. We thus conclude that either physician-researchers are in need of better training regarding the nature of the accountability relationships that flow from their dual roles or that models setting out these roles and relationships must be altered to better reflect what we can reasonably expect of physician-researchers in a real-world environment.

Culture, communication and safety: lessons from the airline industry.

BACKGROUND: Communication is a critical component of effective teamwork and both are essential elements in providing high quality of care to patients. Yet, communication is not an innate skill but a process influenced by internal (personal/cultural values) as well as external (professional roles and hierarchies) factors. OBJECTIVE: To provide illustrative cases, themes and tools for improving communication. METHODS: Literature review and consensus opinion based on extensive experience. RESULTS: Professional autonomy should be de-emphasized. Tools such as SBAR and simulation are important in communication and teamwork. CONCLUSION: Tools designed to improve communication and safety in the aviation industry may have applicability to the pediatric intensive care unit.

Social, political, and epistemological aspects of genetics and genomics.

The papers in this special issue were first given at a conference in Toronto, Canada, in April 2004 entitled 'Genomics, Genetics, and Society: Bridging the Disciplinary Divides'. The papers fall into four intersecting themes. (1) The introduction of genetic and genomic technologies into communities. (2) Governance, the morals of scientific discourse and policy making. (3) What is a gene? (4) Public knowledge, public trust and improved dialogue between the public and scientists.

Genetic testing for hereditary cancers: the impact of gender on interest, uptake and ethical considerations.

Genetic testing promises earlier intervention and more successful outcomes for individuals at risk for hereditary breast/ovarian and colorectal cancer. Research shows that gender influences health and access to health care services. In this paper, we review theoretical issues of gender, and research outcomes, in relation to genetic testing for hereditary cancers. We argue that integrating a gender analysis into assessment of new technologies and health programs is necessary to improve appropriateness, accessibility and effectiveness. Attention to gender is also critical to developing a deeper understanding of the ethical issues (both benefits and harms) raised by new genetic technologies.

Genetic testing for hereditary breast and ovarian cancer: responsibility and choice.

Genetic testing for hereditary breast-ovarian cancer has become an important part of clinical genetics practice. Although considerable work has focused on the psychological impact of this technology, there has been little research into the moral implications of genetic information on hereditary cancer families. In this article, the author examines moral issues related to individuals' decisions to seek or decline testing. In-depth interviews with 53 participants make up the core of the research. Analysis of participants' accounts illustrates how the decision to be tested (or not) interconnects with moral agency and aspects of self (embodied, familial-relational, and civic self). The findings form the foundation for inquiry into conceptualization of moral responsibility, autonomy, and choice. They also provide insight that might assist clinicians to understand more fully the needs and responses of those who seek genetic testing for hereditary breast-ovarian cancer.

The effect of experiential knowledge on construction of risk perception in hereditary breast/ovarian cancer.

The purpose of this study was to explore the connection between experiential knowledge of hereditary breast/ovarian cancer and understandings of personal cancer risk. Using a qualitative research design, the investigator conducted in-depth interviews with 53 individuals (45 female, 8 male) from families at high-risk for hereditary breast/ovarian cancer. Study results showed that two forms of experiential knowledge, empathetic and embodied knowledge, were integral to participants' constructions of their cancer risk. They also illustrated that knowledge derived from experience often took precedence over objective clinical estimates of risk. The paper discusses the clinical implications of these findings and suggests that counseling strategies, which expand upon patient's lived experience and knowledge of the disease, may enhance communication of genetic risk. Assessment of experiential knowledge promises to suggest new ways to frame genetic information that will enable people to better understand their objective risk or to modify exaggerated and/or inaccurate risk perceptions.