Healthcare Policy最新文献

Lanre Tunji-Ajayi is president and CEO of the Sickle Cell Awareness Group of Ontario (SCAGO). This charitable organization focuses on ameliorating the lives of those living with sickle cell disease by providing evidence-based support to patients and supporting clinical and psychosocial research, health promotion and the development of best practice guidelines. Lanre's passion for this work is personal. Following the death of her brother Sunday Afolabi from preventable and treatable complications of sickle cell disease, Lanre immersed herself in advocacy for community health and quality patient care. In this oral history narrative, Lanre reflects on her decades-long journey advocating for those living with sickle cell disease - a disease which disproportionately affects Black people. Her reflections focus acutely on the challenges she has faced in raising awareness and visibility, including through formal public engagement policy processes. Lanre also speaks to the personal costs she has encountered engaging in this advocacy work and the subtle and institutionalized forms of anti-Black racism that have punctuated this already difficult effort to bring about change.

Background: Who participates in public and patient engagement processes, and in what capacity they participate, matters. The strategies employed to recruit participants shape the outcomes and legitimacy of engagement processes. We explore these issues through a case study of workshop recruitment.

Methods: We conducted a mixed-methods study drawing on literature about existing theories of engagement, and integrated findings from the research team's own public engagement workshop in September 2022. We sought to align theoretical frameworks with practical approaches to recruiting for engagement.

Results: There are inherent trade-offs in recruitment methods. While the theory of recruitment is valuable, practical implementation is complex and highly context-dependent. Engaging existing partners and fostering relationships beyond specific events is crucial. Hybrid workshops and low-barrier honoraria promote participation; however, decisions about location and time create barriers. Finally, balancing trusting relationships with critical perspectives can create tension.

Discussion: Recruitment is foundational for the engagement process, and requires flexibility, responsiveness and a realistic understanding of barriers. Our study suggests that there is no universal formula for ideal participant makeup or event format. Meaningful engagement requires ongoing dialogue and constant adjustment based on practice. Policy makers can use these insights to align recruitment and engagement strategies with their goals in order to move beyond quick, technocratic fixes.

Canada has a rich history of public engagement in the health policy sector. However, current political, economic and social challenges call for critical reflection on this history, to assess whether current approaches to engaging Canadian publics are up to the task, and what adaptations or new approaches might be needed. If the persisting inequities in health systems across Canada are going to be addressed, it is imperative that those designing, developing and implementing policies find ways to reflect the needs and preferences of the communities and populations most adversely affected by these inequities in their decisions. The purpose of this special issue is to address this important topic through a series of research papers and commentaries. Our work is targeted to health policy makers across Canada who are seeking to engage with various publics on a wide array of health policy issues. We offer key insights into what more purposeful and equitable public engagement might look like, as well as common pitfalls in public engagement practices and how they can be avoided.

Study objectives: Disproportionately negative pandemic outcomes, lack of race-based data collection and poor engagement of Black communities in policy decision making have been widely documented for Black Canadians. We examine this to understand how formal public engagement processes might be more inclusive of Black peoples to inform more responsive policies.

Methodology: The study employed an asset-based lens to examine how Black communities have engaged in health policy and advocacy in Ontario. In-depth interviews were conducted with eight participants who self-identify as Black, recruited using purposive and intensity sampling to (1) identify information-rich cases, including people who have been at the forefront of high-impact work in this space and (2) participants whose mission and mandates represented diverse approaches and sub-populations.

Results: Our findings suggest that while Black community advocates face systemic and contextual barriers, they also embody deep and multifaceted knowledge, training and experience, which inform the rich ways that they approach advocacy.

Discussion: Despite its Ontario focus, this study adds breadth and depth to the existing literature on health policy and historically marginalized populations, offering broader lessons for policy makers across jurisdictions. Our findings encourage policy makers to better recognize, make space for and cultivate fertile advocacy foundations, cultural knowledge and community-driven systems already present in Black communities.

There are many challenges with stewarding a public healthcare delivery system in Canada. The system is a beast with its own momentum. The public shares sad experiences with accessing emergency departments or securing a primary care physician on a daily basis. Provinces, territories and the federal government are all acutely aware that their delivery systems perform poorly in contrast with other countries.

At its core, public engagement is geared toward transformative ends - to change the world for the better. Yet, the means are also critical. Scholars who engage communities and public processes should do so ethically, in ways that comport with core values. Despite good intentions, however, researchers seeking to engage the public face substantial challenges. This paper highlights the pitfalls and perils associated with scholarly public engagement and points to the promise of ethical and transformative engagement - that is, engagement for sound reasons carried out in effective ways. I make the case that ethical and transformative public engagement requires that researchers remain aware of their position, attentive to who is being engaged and discerning about how to engage.

Introduction: Canada has a rich history of public engagement in health policy; however, shifts in engagement practices over time have not been critically examined.

Methodology: We searched for cases of government-initiated public engagement in Canadian health policy from 2000 to 2021 at the federal, provincial (Ontario, British Columbia, Nova Scotia) and pan-Canadian levels. Government databases, portals and platforms for engagement were searched, followed by academic and grey literature using relevant search terms. A coding scheme was iteratively developed to categorize cases by target population, recruitment method and type of engagement.

Results: We identified 132 cases of government-initiated public engagement. We found a predominance of feedback and consultation engagement types and self-selection recruitment, especially at the federal level from 2016 onward. Engagements that targeted multiple populations (patients, public and other stakeholders) were favoured overall and over time. Just over 10% of cases in our survey mentioned efforts to engage with equity-deserving groups.

Conclusion: Overall, our results identify a heavy reliance over time on more passive, indirect engagement approaches, which limit opportunities for collaborative problem solving and fail to include equity-deserving populations. Those overseeing the design and implementation of government-initiated public engagement will draw valuable lessons from this review to inform the design of engagement initatives.

Camille Orridge is a patient and community-focused healthcare leader who has passionately and tirelessly worked for more than 50 years to address systemic barriers in the healthcare system, creating innovative equitable health solutions for underserved populations. She has founded a number of key initiatives, including Pathways to Education, the Canadian Home Care Association and the Black Coalition for AIDS Prevention (Black CAP) and has served on numerous boards, as a volunteer and in her capacity as the CEO of the Toronto Central Local Health Integration Network. In this oral history narrative, Camille reflects on her extensive 50-year journey as a healthcare advocate, identifying victories but also areas that continue to be barriers for historically marginalized communities, such as Black communities. In so doing, she discusses the complexities that she has encountered while pushing boundaries and reimagining a more equitable healthcare system in Ontario and reveals key historical touchpoints in the health equity and advocacy space.

Almost 50,000 people in Canada have had a medically assisted death since federal legislation was passed in 2016. Still, the debate about the permissibility of medical assistance in dying (MAiD) continues to rage. The central role of shared values and ethics in public policy making emphasizes the importance of engaging the public, particularly around heavily value-laden issues such as MAiD. Public deliberation, a mode of engagement that fosters sustained and reasoned discussion between participants, is well-suited to addressing such ethically contentious policy issues. In this paper, we review recent efforts to engage the public on assisted dying within and outside Canada and explain how public deliberation could contribute substantively to MAiD policy making.

Introduction: Public engagement in long-term care policy making in Canada has primarily focused on "intermediary agents" who speak on behalf of long-term care (LTC) residents and their family caregivers. Yet the legitimacy of these intermediaries, as perceived by those they represent, has gone largely unexplored. This study examines LTC resident and family perspectives on who can legitimately represent them in LTC policy making.

Methodology: We used an interpretive description design, drawing on semi-structured interviews with LTC residents and family caregivers in Ontario, Canada. Data were analyzed using inductive thematic analysis.

Results: Eighteen interviews were conducted with 19 participants. Three key characteristics of legitimate representatives were identified: (1) willingness to act in the best interests of residents and families, (2) having the necessary skills and capacity to participate in LTC policy making and (3) engaging directly with residents and families.

Conclusion: Governments and civil society organizations seeking to establish and maintain legitimacy in the eyes of LTC residents and family members can pursue this goal by supporting intermediaries who mirror the identities or experiences of those they represent, who are dedicated to serving their interests and who routinely and directly engage with them to understand the realities of LTC.