Towards equitable representation in long-term residential care: widening the circle to ensure "essential voices" in research teams.

The COVID-19 pandemic exposed long-standing inequities in Canada's long-term residential care (LTRC) sector with life-threatening consequences. People from marginalized groups are overrepresented among those who live in, and work in LTRC facilities, yet their voices are generally silenced in LTRC research. Concerns about these silenced voices have sparked debate around ways to change LTRC policy to better address long-standing inequities and enhance the conditions that foster dignity for those who live and work in LTRC. Weaving an analysis of historical and cultural attitudes about LTRC, and promising strategies for engaging people with lived experience, we argue that the voices of people with lived experience of life and work (paid and unpaid) in LTRC are essential for ethically and effectively shifting long-standing inequities. Lessons from a 4-year, national, multi-disciplinary research study, known as the Seniors Adding Life to Years (SALTY) project, suggest that resident-determined quality of life can be prioritized by centring the perspectives of residents, their family/friends, direct care workers, volunteers, and people living with dementia in the research process. Accordingly, we highlight strategies to include these voices so that meaningful and impactful system change can be realized.

This article argues that long-term residential care facilities in Canada have a long history of perpetuating social inequalities, beginning with seventeenth century poor houses and almshouses, from which long-term residential care facilities evolved in North America. We highlight that those who currently reside in long-term residential care are more likely to be people with less social power­for example women, people living with dementia, and people with low-income. These residents are rarely included in research projects as co-designers of research, co-producers of knowledge, or experts on the realities of long-term residential care. We explore strategies for addressing these underrepresented voices and inequalities in research by highlighting promising examples of resident, family, and worker-engagement emerging from a pre-pandemic to early pandemic pan-Canadian research project on quality of life in long-term residential care. We argue that long-term residential care residents, their family/friend caregivers, people living with dementia, and direct care workers have voices that are essential in residential care design and research engagement strategies. By prioritizing these voices in research, we can better amplify their critical perspectives in broader policy and decision-making processes that guide meaningful and impactful system change.

Intersectionality, health equity, and EDI: What's the difference for health researchers?

Many countries adopted comprehensive national initiatives to promote equity in higher education with the goal of transforming the culture of research. Major health research funders are supporting this work through calls for projects that focus on equity, resulting in a proliferation of theoretical frameworks including "intersectionality," "health equity," and variations of equity, diversity and inclusion, or EDI. This commentary is geared at individual principal investigators and health research teams who are developing research proposals and want to consider equity issues in their research, perhaps for the first time. We present histories and definitions of three commonly used frameworks: intersectionality, health equity, and EDI. In the context of health research, intersectionality is a methodology (a combination of epistemology and techniques) that can identify the relationships among individual identities and systems of oppression; however, it should also be used internally by research teams to reflect on the production of knowledge. Health equity is a societal goal that operationalizes the social determinants of health to document and address health disparities at the population level. EDI initiatives measure and track progress within organizations or teams and are best suited to inform the infrastructure and human resourcing "behind the scenes" of a project. We encourage researchers to consider these definitions and strive to tangibly move health research towards equity both in the topics we study and in the ways we do research.

Emergent Issues in Directly-Funded Care: Canadian Perspectives.

Direct Funding (DF) provides individuals with a budget to arrange their own home care instead of receiving publicly arranged services. DF programs have evolved in a number of countries since the 1970s. In Canada, while small-scale DF programs have existed since the early 1970s, the research on these programs remains limited. Responding to gaps identified by an umbrella review and using a health equity framework, this research extends the knowledge base on DF programs from a Canadian perspective through an environmental scan. The research asks: What are the features of DF programs across Canada? What are the emerging issues related to program design and policy development? The study employed a qualitative environmental scan design, gathering data through questionnaires and semi-structured interviews (n = 23). The findings include a summary table describing features of 20 programs and two interview themes: a lack of information on DF workers and concerns about the growing role of home care agencies. This study has the potential to contribute to long-term health equity monitoring research. The findings suggest that as DF expands in Canada, promoting hiring from personal networks may address inequities in rural access to home care services and improve social outcomes for linguistic, cultural, and sexual minorities. However, the findings underscore a need to monitor access to DF programs by people of lower-socioeconomic backgrounds in Canada and discourage policy design that requires independent self-management, which disadvantages people with compromised decision-making capacities.

Making Contributions and Defining Success: An eDelphi Study of the Inaugural Cohort of CIHR Health System Impact Fellows, Host Supervisors and Academic Supervisors.

CONTEXT: The Health System Impact (HSI) Fellowship, an innovative training program developed by the Canadian Institutes of Health Research's Institute of Health Services and Policy Research, provides PhD-trained health researchers with an embedded, experiential learning opportunity within a health system organization. METHODS/DESIGN: An electronic Delphi (eDelphi) study was conducted to: (1) identify the criteria used to define success in the program and (2) elucidate the main contributions fellows made to their organizations. Through an iterative, two-round eDelphi process, perspectives were elicited from three stakeholder groups in the inaugural cohort of the HSI Fellowship: HSI fellows, host supervisors and academic supervisors. DISCUSSION: A consensus was reached on many criteria of success for an embedded research fellowship and on several perceived contributions of the fellows to their host organization and academic institutions. This work begins to identify specific criteria for success in the fellowship that can be used to improve future iterations of the program.

CIHR Health System Impact Fellows: Reflections on "Driving Change" Within the Health System.

Learning health systems necessitate interdependence between health and academic sectors and are critical to address the present and future needs of our health systems. This concept is being supported through the new Canadian Institutes of Health Research (CIHR) Health System Impact (HSI) Fellowship, through which postdoctoral fellows are situated within a health system-related organization to help propel evidence-informed organizational transformation and change. A voluntary working group of fellows from the inaugural cohort representing diversity in geography, host setting and personal background, collectively organized a panel at the 2018 Canadian Association for Health Services and Policy Research Conference with the purpose of describing this shared scholarship experience. Here, we present a summary of this panel reflecting on our experiential learning in a practice environment and its ability for impact.