Ambreen Sayani’s research while affiliated with University of Toronto and other places

Introduction: Cancer is the leading cause of death in Canada. Social distancing regulations during the COVID-19 pandemic drove the rapid transitions of health care systems from in-person to virtual cancer care. Virtual care refers to the secure usage of various forms of information and communication technologies such as phone calls, video conferencing, or patient portals to facilitate/optimize the quality of patient care. Virtual care has been shown to be effective for a variety of uses in cancer care, such as pre-treatment discussions and counselling purposes. However, recent research suggests that although virtual cancer care (VCC) can enhance access to health services for some communities, it can also exacerbate health inequities for socially disadvantaged groups such as Racialized communities that may not be able to afford necessary digital technology required for virtual care. Furthermore, older adults face additional challenges when interacting with technology including restricted ability to use technology due to physical or cognitive limitations. Although Black people in Canada are reported to have the lowest rates of access to digital health technologies, it is still unclear how race affects VCC in Canada. It is essential that VCC is delivered in a manner that meets the needs of all communities and does not exacerbate inequities between the socially advantaged and socially disadvantaged communities. The objective of this study was to better understand the VCC experience of older Black patients, their caregivers and healthcare providers. Methods: Qualitative studies are appropriate to capture the lived experiences of individuals/communities of a social phenomena such as VCC. We used a theory-informed thematic analysis, using data collected from six focus groups (N= 55 participants: 40 patients and caregivers, and 15 healthcare providers) conducted across ten Canadian provinces. Qualitative data analysis was facilitated by the Nvivo 11 software. Data was coded using the Patient Centred Care model and the Synergies of Oppression framework guided interpretation. Results: The experiences of older Black patients, their caregivers and healthcare providers in using VCC were captured in five overarching themes: Patient at the intersection of multiple systems of oppression; Shifting role of caregivers; Giving choice and choosing based on the purpose of care; Opportunity to meet health care needs through digital access; Communicating effectively through virtual care. Eight barriers to optimal VCC such as limited digital literacy, linguistic barriers in traditional African/Caribbean languages, and culturally mediated views of patients were identified. We also identified six facilitators to optimal VCC such as community-based cancer support groups, caregivers support and key features of digital technologies. Conclusion: This study suggests that efforts to improve the quality of VCC necessitates a multipronged approach that addresses barriers while leveraging culturally sensitive guides to VCC. Initiative to redesign VCC programs tailored to the needs of socially disadvantaged communities like older Black patients may improve the virtual care experience for the whole population. Public policies and practices that address issues like availability of internet in remote areas, resources to support linguistic barriers or culturally sensitive training are important in responding to the complexity of access to VCC

Introduction Health Equity Assessments (HEAs) are decision‐support frameworks or tools used to evaluate the equity impacts of policies, programmes and initiatives. However, HEAs are often conducted without meaningful engagement from the individuals and communities most affected by health inequities. This lack of social participation limits the relevance and effectiveness of HEAs, leaving systemic inequities unaddressed and opportunities for impactful change unrealized. An alternative is to involve people with diverse lived/living experiences in conducting and offering HEAs—so that people most impacted, and most excluded by decision‐making can offer recommendations to improve the way they access and utilise care. Methods Equity Mobilizing Partnerships in Community (EMPaCT) is a scalable, participatory citizen engagement model that integrates lived/living experiences into the HEA process. EMPaCT's Five Steps to a Community‐Engaged Health Equity Assessment (CEn‐HEA) was co‐designed with community members typically excluded from decision‐making. This process fosters psychological safety, trust‐building, and power‐sharing between underserved communities and decision‐makers. The CEn‐HEA systematically analyzes inequities across downstream (individual), midstream (community), and upstream (structural) levels to generate actionable, equity‐focused recommendations. Results The EMPaCT CEn‐HEA framework produces context‐specific recommendations that address immediate project needs while advancing long‐term, systemic change. The framework is a participatory process that centres community voices, builds trust, amplifies lived/living expertise, and fosters equity‐driven decision‐making that can lead to measurable improvements in healthcare policies, programmes, and practices. Conclusion In this paper, we examine the challenges and opportunities associated HEAs; introduce EMPaCT's CEn‐HEA framework as a co‐designed, innovative, and community‐engaged approach to health equity analysis; and discuss methods for measuring and evaluating the health equity impacts of these efforts. Patient or Public Contribution Patient and community involvement were central to the design, development and implementation of this project and resulting manuscript. Equity Mobilizing Partnerships in Community (EMPaCT), including its Community‐Engaged Health Equity Assessment (CEn‐HEA) framework, was co‐created with diverse patient partners who have lived/living experiences of health inequities. In the preparation of this manuscript, patient partners were involved in codesign sessions to define the focus, structure and language of the manuscript. They collaborated in discussions to refine key concepts, articulate challenges and highlight solutions that are grounded in their lived realities. In the preparation of this manuscript, patient partners reviewed early drafts, contributed feedback to ensure accessibility and relevance of the content and shaped the actionable recommendations. This manuscript reflects EMPaCT's commitment to justice, inclusion and meaningful change.

Introduction Deliberative dialogue (DD) is a participatory research methodology wherein stakeholders with diverse backgrounds, experiences and interests come together to engage in discussions to build consensus for collaborative decision-making. The methodology is increasingly used in health promotion research to develop equitable solutions to complex problems. A review of PubMed-indexed papers alone showed a 9% increase in published DD studies in 2024 from prior years (2020–2023), with most focusing on health promotion and service co-design. Given the increasing emphasis on multistakeholder engagement in research, there is a need to understand how DD has been used as a methodological tool for the co-design, modifications, implementation, evaluation, and knowledge dissemination of health promotion interventions. This scoping study aims to comprehensively understand the application of DD in intervention design to provide a framework to ensure DD is employed with methodological rigour. It will offer valuable insights into how its systematic use can improve the credibility, validity, and trustworthiness of study findings while respecting the principles of participation and knowledge co-production. Methods This scoping review follows the Arksey & O’Malley framework. The Arksey & O’Malley framework is designed to map the key concepts, types of evidence, and gaps in research, consisting of five stages: identifying research questions, selecting relevant studies, screening, data charting, and summarizing results. The research team includes decision-makers, researchers, healthcare providers involved in the co-design, co-implementation and co-evaluation of health-promoting interventions, and two patient partners with previous experience in collaborative decision-making. Searches will be performed across multiple databases such as OVID Medline, PsycINFO, PubMed, CINAHL, and Scopus databases. Studies will undergo abstract and full-text screening using Covidence. Covidence is an online platform designed to simplify the process of creating systematic and other in-depth literature reviews (including scoping reviews, rapid reviews, and meta-syntheses), abstract, full-text screening, and extraction of study details, results, and references. A data extraction template has been co-developed building on Guidance for Reporting Involvement of Patient and Public (GRIPP2), which ensures comprehensive reporting of patient and public involvement in research, and the Consolidated Standards of Reporting Trials (CONSORT) checklist facilitates the consistent reporting of methodologies. This data will allow us to understand how DD is used to co-design health interventions. Data extraction will be performed by one reviewer and verified by a second reviewer for consistency. It will then be synthesized to map how DD has been used across various stages of health promotion interventions. Ethics and dissemination This scoping review does not require ethics approval as it analyzes data from existing research articles. The results will inform the development of guidelines to support methodologically rigorous DD regarding the co-design, co-implementation, and co-evaluation of health-promoting interventions.

Background Health systems are rapidly promoting digital cancer care models to improve cancer care of their populations. However, there is growing evidence that digital cancer care can exacerbate inequities in cancer care for communities experiencing social disadvantage, such as Black communities. Despite the increasing recognition that older Black adults face significant challenges in accessing and using health care services due to multiple socioeconomic and systemic factors, there is still limited evidence regarding how older Black adults’ access and use digital cancer care. Objective This study aims to better understand the digital cancer care experience of older Black adults, their caregivers, and health care providers to identify strategies that can better support patient-centered digital cancer care. Methods A total of 6 focus group interviews were conducted with older Black adults living with cancer, caregivers, and health care providers (N=55 participants) across 10 Canadian provinces. Focus group interviews were recorded and transcribed. Through a theory-informed thematic analysis approach, experienced qualitative researchers used the Patient Centered Care model and the synergies of oppression conceptual lens to inductively and deductively code interview transcripts in order to develop key themes that captured the digital cancer care experiences of older Black adults. Results In total, 5 overarching themes describe the experience of older Black adults, caregivers, and health care providers in accessing and using digital cancer care: (1) barriers to access and participation in digital care services, (2) shifting caregivers’ dynamics, (3) autonomy of choice and choosing based on the purpose of care, (4) digital accessibility, and (5) effective digital communication. We identify 8 barriers and 6 facilitators to optimal digital cancer for older Black adults. Barriers include limited digital literacy, linguistic barriers in traditional African or Caribbean languages, and patient concerns of shifting power dynamics when supported by their children for digital cancer care; and facilitators include community-based cancer support groups, caregiver support, and key features of digital technologies. Conclusions These findings revealed a multifaceted range of barriers and facilitators to digital cancer care for older Black adults. This means that a multipronged approach that simultaneously focuses on addressing barriers and leveraging community strengths can improve access and usage of digital cancer care. A redesign of digital cancer care programs, tailored to the needs of most structurally marginalized groups like older Black adults, can enhance the digital care experience for all population groups. Public policies and organizational practices that address issues like availability of internet in remote areas, resources to support linguistic barriers, or culturally sensitive training are important in responding to the complexity of access to digital l cancer care. These findings have implications for other structurally marginalized and underresourced communities that have suboptimal access and usage of digital care.

BACKGROUND Health systems are rapidly promoting virtual cancer care models to improve cancer care of their populations. However, virtual cancer care can exacerbate inequities in cancer care for communities experiencing social disadvantaged. Older Black cancer patients face unique challenges to accessing and utilizing virtual cancer care. OBJECTIVE This study focused on understanding the virtual cancer care experience of older Black patients, their caregivers and healthcare providers to identify strategies that can better support patient-centered virtual cancer care. METHODS A theory-informed thematic analysis was conducted using data collected from six focus groups (N = 55 participants) conducted across ten Canadian provinces. Data coding and thematic analysis was informed by the Patient Centered Care model and the synergies of oppression conceptual lens. RESULTS Five overarching themes describe the experience of older Black patients, caregivers and health care providers in accessing and utilizing virtual cancer care: i) heightened inequities at the intersection of multiple systems of oppression; ii) shifting caregivers’ dynamics; iii) autonomy of choice and choosing based on the purpose of care; iv) digital accessibility and v) effective digital communication. We identify eight barriers and six facilitators to optimal virtual cancer for older Black adults. Barriers include limited digital literacy, linguistic barriers in traditional African/Caribbean languages, and culturally mediated views of patients; and facilitators include community-based cancer support groups, caregivers support and key features of digital technologies. CONCLUSIONS A multipronged approach that simultaneously focuses on addressing barriers and leveraging community strengths can improve access and utilization of virtual cancer care. A redesign of virtual cancer care programs, tailored to the needs of most structurally marginalized groups like older Black adults can enhance the virtual care experience for all population groups. Public policies and organizational practices that address issues like availability of internet in remote areas, resources to support linguistic barriers or culturally sensitive training are important in responding to the complexity of access to virtual cancer care. These findings have implications for other structurally marginalized and underserved communities that have suboptimal access and utilization of virtual care. CLINICALTRIAL N/A

Background Patient engagement is the active collaboration between patient partners and health system partners towards a goal of making decisions that centre patient needs—thus improving experiences of care, and overall effectiveness of health services in alignment with the Quintuple Aim. An important but challenging aspect of patient engagement is including diverse perspectives particularly those experiencing health inequities. When such populations are excluded from decision-making in health policy, practice and research, we risk creating a healthcare ecosystem that reinforces structural marginalisation and perpetuates health inequities. Approach Despite the growing body of literature on knowledge coproduction, few have addressed the role of power relations in patient engagement and offered actionable steps for engaging diverse patients in an inclusive way with a goal of improving health equity. To fill this knowledge gap, we draw on theoretical concepts of power, our own experience codesigning a novel model of patient engagement that is equity promoting, Equity Mobilizing Partnerships in Community, and extensive experience as patient partners engaged across the healthcare ecosystem. We introduce readers to a new conceptual tool, the Power Wheel, that can be used to analyse the interspersion of power in the places and spaces of patient engagement. Conclusion As a tool for ongoing praxis (reflection +action), the Power Wheel can be used to report, reflect and resolve power asymmetries in patient-partnered projects, thereby increasing transparency and illuminating opportunities for equitable transformation and social inclusion so that health services can meet the needs and priorities of all people.

The World Health Organization envisions achieving "Health for All," to strive for equitable access to important health information and services to attain wellness (WHO 2023a). The COVID-19 pandemic reshaped the Canadian health system toward increasing digital health services, which improved access for some but underserved others. Integrating digital health into holistic health services delivery deserves careful consideration. This paper introduces the concept of "essential digital health for the underserved," by first defining the terms "digital health," "essential" and "underserved." Then, we share a summary of a discussion at a May 2023 conference with stakeholders, including patients, caregivers, health professionals, health policy makers, private sectors and health researchers. A series of papers follow to explore how digital health can help chart a responsible course for the future of essential digital health in Canada. In this post-pandemic era - with a health human resources shortage through attrition and retirement, an increased health service demand from patients and a greater strain on our recovering economy - innovative solutions need to be implemented to strengthen our Canadian health system.

Learning health systems (LHSs) embed social accountability into everyday workflows and can inform how governments build bridges across the digital health divide. They shape partnerships using rapid cycles of data-driven learning to respond to patients' calls to action for equity from digital health. Adopting the LHS approach involves re-distributing power, which is likely to be met with resistance. We use the LHS example of British Columbia's 811 services to highlight how infrastructure was created to provide care and answer questions about access to digital health, outcomes from it and the financial impact passed on to patients. In the concluding section, we offer an accountability framework that facilitates partnerships in making digital health more equitable.