Equity Mobilizing Partnerships in Community (EMPaCT): An innovation inequitable community and patient engagement
Creators: name: Sayani, Ambreen
Publisher: name: Nature Awards for Inclusive Health Research
Year: 2024
Subjects: classificationCode: 420602
subject: Health equity

description: <b>Abstract</b>Equity Mobilizing Partnerships in Community (EMPaCT) is a novel, scalable patient-partnership model co-designed to centre the voices of diverse community members and build capacity for equity-promoting, person-centered decision-making in health and social care. EMPaCT was co-initiated at Women’s College Hospital in Toronto, Canada in 2020 by scientific lead Dr. Ambreen Sayani and patient-partner lead Alies Maybee, as a direct response to exclusionary patient-engagement practices. They began by co-defining key principles in inclusive patient engagement and partnering with diverse people with lived experience (PWLE) to co-create a systems-level model that mobilizes collective lived experiences into actionable equity-promoting knowledge. The model applies equity-oriented, trauma-informed, and sustainable approaches to patient engagement to drive research and policy innovation, advance the science of equity-promoting engagement and spread the model in different jurisdictions by offering tools, resources, and experiential learning opportunities. <b>Introduction</b>An important but challenging aspect of patient engagement is including diverse perspectives. Increasing the diversity of representation in patient partnerships can prevent further exclusion of groups who already experience marginalizing societal conditions that have been created through historical and systematic discrimination based on factors such as low income, low literacy, gender, sexual orientation, racialization, Indigenous identity, disability, and homelessness. While it is increasingly understood that health and socialsystem leaders, researchers, and policymakers need to engage more inclusively and partner with patients who offer their expertise from a diverse range of conditions, few patient-engagement practices have successfully achieved this goal.Equity Mobilizing Partnerships in Community (EMPaCT) is an innovative and scalable patient-partnership model designed to address systemic inequities in health and social care by centering the voices of diverse community members. EMPaCT works to transform patient engagement into an equity-promoting and person-centered process by integrating the lived experiences of structurally marginalized populations into actionable knowledge that can drive systemic change in research, policy and practice. By employing equity-oriented, trauma-informed approaches, EMPaCT fosters a collaborative environment where PWLE contribute directly to decision-making in health and social care. This commitment to inclusivity and equity in engagement has positioned EMPaCT as a leading model in advancing the science of patient-partnership, with broad potential for application across various healthcare settings. Its framework is adaptable and intended for widespread dissemination, promoting sustainable and equity-focused patient engagement across diverse jurisdictions.<br><b>Context</b>Toronto is the most populous city in Canada, with a population of 6.2 million. It is one of the most diverse cities in the world with 46% of residents having been born outside of Canada and 42% having a first language other than the country’s official languages (English and French).While health-system decision-makers in Toronto and across Canada increasingly recognize the importance of engaging people who reflect the diversity of communities served by health systems, most practices continue to be unsuccessful. This is in part because structurally marginalized patients are less likely to have had prior relationships with institutions due to historical trauma and experiences of stigma or discrimination in healthcare settings.Patient-engagement activities are also often unpaid and held at times and places that meet the schedules of health-system partners not participants.EMPaCT has been co-designed in response to exclusionary patient-engagement practices. Our focus is to value the lived experience and knowledge of diverse communities that have been historically absent from healthcare-service delivery and design; to build a collective narrative; and to take bottom-up action towards health equity by influencing health-system decision-makers. We co-developed EMPaCT using an equity-oriented and trauma-informed approach that is inclusive in terms of use of language (it does not use labels that convey judgment or elicit power); digital equity and virtual participation (it arranges training for members, holds meetings at times that work around people’s schedules and caregiving responsibilities, and proactively responds to participants’ needs as they emerge); and provision of sustainable safe spaces (it prioritizes relationships and developing a model of engagement that is not dependent on the life cycle of a single project to prevent tokenistic involvement).Since inception, we have followed the Institute for Healthcare Improvement (IHI) Framework for Going to Full Scale to co-develop EMPaCT into a sustainable and scalable model of equitable community engagement. We are currently scaling a jurisdiction-specific EMPaCT in an additional health-care setting in Ontario through funding received by the Public Health Agency of Canada.<b>Engagement</b>Members of EMPaCT co-designed how, why, and when they wanted to be engaged in health and social-system decision-making. EMPaCT co-developed a process to translate the collective lived experiences of members into a written Health Equity Analysis (HEA). Decision-makers (such as health-system leaders, researchers, and policymakers) who seek EMPaCT’s expertise on how to increase the inclusivity of their projects request a seat at the EMPaCT community table, flipping power dynamics such that patient partners decide who they will engage with, when and where they meet, appropriate compensation for their expertise, and accountability structures for decision-makers who engage with them.Individuals on the committee have a safe relationship-based space within which to share insights and influence recommendations, accruing power in ways not usually possible within other engagement models.An EMPaCT HEA engagement has five key steps.First, members of the project team (referred to as impact partners) complete an intake package and attend a scoping meeting with the patient-partner lead, scientific lead, and project coordinator to prepare for their engagement with EMPaCT. This refines the scope of the engagement to focus on what value EMPaCT can bring to the impact partner’s project. After the meeting, the intake form is revised and returned to the EMPaCT team.Second, a preparatory meeting is held to refine the questions impact partners would like to discuss with EMPaCT members during their engagement. Impact partners receive coaching on how to create a space for authentic dialogue and learning. Finalized intake materials are shared with EMPaCT members in advance of the engagement to guide conversation.Third, impact partners engage with members of EMPaCT to learn how different communities might be impacted by their project, what unintended outcomes may occur, and how equity in health can be better addressed.Fourth, impact partners receive a confidential written report validated by all EMPaCT members, which captures the key themes and recommendations from the meeting.Fifth, to ensure reciprocity, transparency, and continuous evaluation, impact partners are asked to provide feedback on how they have modified their project based on their engagement with EMPaCT.<b>Research</b>Through the HEA for health-system partners across Canada, EMPaCT has introduced several improvements to research projects including how patient partners are recruited and engaged with by research teams; how policies reflect the risks and unintended consequences of collecting sociodemographic data for marginalized communities; user experience and accessibility of online resources; study-recruitment materials and outreach approaches for diverse communities; and shaping the public-engagement strategy for a newly created national agency.Health-system partners acknowledge EMPaCT in journal articles and conference presentations. As a group, we have also published three journal articles (with two forthcoming) on EMPaCT’s sustainable and scalable model of engagement, and introduced a new conceptual tool called the Power Wheel to transform spaces and places of patient engagement to promote health equityEMPaCT also conducts its own research on priority topics identified by its members for which we actively seek funding.<b>Translating into impact</b>Our most important impact to date has been co-creating safe spaces where diverse community members feel supported in identifying and speaking about their needs and priorities. We are increasingly able to conduct research together on priority topics important to EMPaCT members. This engagement also creates opportunities for experiential learning for project implementers, researchers, policymakers, and student trainees, which have been described to us as fundamentally transformational.We have grown in size as a community; received awards and grants in support of our work; published journal articles; conducted presentations and workshops, including to international audiences such as the International Conference on Integrated Care in Belgium and to health-system leaders and policymakers in Scotland; and co-designed a digital library of resources.To date, we have conducted 22 HEAs and provided each team of impact partners with a confidential report summarizing key themes and recommendations for how to improve equity in their project. We have informed decisions for impact teams representing six hospitals, four provincial- and regional-level decision-making groups, and two national-level groups. We have engaged in over 15 impact partnerships with over 40 impact partners (including project implementers, researchers, and policymakers).Since 2020, EMPaCT has been mobilizing the power of lived experience to ignite a health equity movement, with a vision for a future where health and social care systems are inclusive, just, and shaped by the people whose lives are most impacted. Our goal is to spread and scale the model across organizations and sectors both within Canada