
Editorial
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Canada is seeing increased interest in engaging patients in health research, recognizing the potential to improve its relevance and quality. The momentum is promising, but there may be a tendency to ignore the challenges inherent when lay people and professionals collaborate. We address some of these challenges as they relate to recruitment, training, and support for patients at the British Columbia (BC) Support for People and Patient-Oriented Research Unit, part of Canada’s Strategy for Patient-Oriented Research. A retrospective review of a telehealth project demonstrates that, as well as the practical elements of recruitment, training, and support, attention must be paid to issues of credibility, legitimacy, and power when engaging patients. We propose that all patient-oriented research projects would benefit from using a similar framework to guide patient engagement planning and implementation, helping to anticipate and mitigate challenges from the outset. Projects would ideally also include the study of patient engagement methods, to add to this important body of knowledge.
Although patient engagement in research is widely touted as an important foundation for improving the relevance and sustainability of research findings, there is little consensus on how to do it in practice. This article describes our research team’s experiences working with and engaging parents throughout the entire research process to reach full partnership in the identification, management, and dissemination of research. Our report of these experiences includes lessons learned along the way regarding how healthcare and research organizations can better support researchers and patients to achieve successful partnerships.
Patients as Partners is a quality improvement initiative of the British Columbia Ministry of Health (the Ministry) that aims to bring patient voice, choice, and representation to the forefront of healthcare through collaboration with patients, families, non-governmental organizations, funded partners, regional health authorities, and healthcare providers. A spectrum of patient engagement activities, including capacity building and self-management support, occur through partnerships at the individual patient and provider, community, and system levels. These activities ensure patient priorities are identified and embed a patient-centred care approach into provincial policies and projects. Multi-/interdisciplinary collaborations in the healthcare sector occur through participation in working groups, advisory committees, and engagement events. Ongoing improvements include enhancing measurement strategies and leveraging opportunities around gaps. The Ministry was honoured with the International Association of Public Participation Award as the 2016 Canadian Organization of the Year in recognition of improving healthcare through patient and public education.
Engaging patients and families in research and the design of quality improvement is an essential component of Patient and Family Centred Care (PFCC). Alberta Health Services (AHS) has been engaging patients and families to promote a cultural shift towards PFCC. The AHS trains patient and family advisors to share their experiences and encourages staff to work with advisors to co-design improvements in care. This article briefly describes the role and growth of patient and family advisors, advisory groups, and the participation of advisors in research initiatives through AHS’ Strategic Clinical NetworksTM. It also describes recent efforts to build AHS’ patient and family engagement capacity by introducing standard patient engagement training, supporting the creation of the innovative Patient and Community Engagement Research internship program, and by developing tools to measure the impact of patient and advisors on AHS. And finally, this article provides key learnings for health leaders.
This article highlights a novel approach to professional development, integrating leadership, development and patient-centred health system transformation in the new Fellowship Program in Health System Improvement offered by the School of Public Health at the University of Alberta. Early assessment of the program is also provided.
Employee silence constitutes a significant threat to organizational success. This article argues that silence is a by-product of a structural Conflict of Interest (COI) between employees and their employers. This argument turns on the claim, also defended here, that employees are in a privileged position vis-à-vis knowledge of their work and that leaders—whether they recognize it or not—are dependent on their employees for reliable information about the work they are doing. Employee voice, therefore, is an organizational necessity. It is also a moral achievement as it involves risking one’s personal interests for the sake of the organization. Leaders must take steps to mitigate COI and encourage employee voice; this article provides several strategies for doing exactly that.
Le silence des employés constitue une menace importante pour la réussite des organisations. Dans le présent article, les auteurs avancent que le silence dérive du conflit d’intérêts (CdI) structurel entre les employés et leur employeur. Cet argument repose sur la thèse également défendue dans l’article selon laquelle les leaders, qu’ils l’acceptent ou non, dépendent de leurs employés pour obtenir de l’information fiable sur le travail effectué, car ceux-ci connaissent intimement ce qu’ils font. La parole des employés devient donc une nécessité organisationnelle. C’est également une réalisation morale, car elle oblige l’individu à risquer ses intérêts personnels au profit de ceux de l’organisation. Les leaders doivent prendre des mesures pour atténuer les CdI et inciter les employés à s’exprimer. Le présent article leur fournit plusieurs stratégies en ce sens.