Engaging with peers to integrate community care: Knowledge synthesis and conceptual map.

CONTEXT: Engaging with peers is gaining increasing interest from healthcare systems in numerous countries. Peers are people who offer support by drawing on lived experiences of significant challenges or 'insider' knowledge of communities. Growing evidence suggests that peers can serve as a bridge between underserved communities and care providers across sectors, through their ability to build trust and relationships. Peer support is thus seen as an innovative way to address core issues of formal healthcare, particularly fragmentation of care and health inequalities. The wide body of approaches, goals and models of peer support speaks volumes of such interest. Navigating the various labels used to name peers, however, can be daunting. Similar terms often hide critical differences. OBJECTIVES/BACKGROUND: This article seeks to disentangle the conceptual multiplicity of peer support, presenting a conceptual map based on a 3-year knowledge synthesis project involving peers and programme stakeholders in Canada, and international scientific and grey literature. SYNTHESIS/MAIN RESULTS: The map introduces six key questions to navigate and situate peer support approaches according to peers' roles, pathways and settings of practice, regardless of the terms used to label them. As a tool, it offers a broad overview of the different ways peers contribute to integrating health and community care. DISCUSSION: We conclude by discussing the map's potential and limitations to establish a common language and bridge models, in support of knowledge exchange among practitioners, policymakers and researchers. PATIENT OR PUBLIC CONTRIBUTION: Our team includes one experienced peer support worker. She contributed to the design of the conceptual map and the production of the manuscript. More than 10 peers working across Canada were also involved during research meetings to validate and refine the conceptual map.

How does community engagement evolve in different compassionate community contexts? A longitudinal comparative ethnographic research protocol.

Background: Compassionate communities build on health promoting palliative care that aims to address gaps in access, quality, and continuity of care in the context of dying, death, loss, and grief. While community engagement is a core principle of public health palliative care, it has received little attention in empirical studies of compassionate communities. Objectives: The objectives of this research are to describe the process of community engagement initiated by two compassionate communities projects, to understand the influence of contextual factors on community engagement over time, and assess the contribution of community engagement on proximal outcomes and the potential for sustaining compassionate communities. Research Approach and Design: We use a community-based participatory action-research approach to study two compassionate communities initiatives in Montreal (Canada). We develop a longitudinal comparative ethnographic design to study how community engagement evolves in different compassionate communities contexts. Methods and Analysis: Data collection includes focus groups, review of key documents and project logbooks, participant observation, semi-structured interviews with key informants, and questionnaires with a focus on community engagement. Grounded in the ecology of engagement theory and the Canadian compassionate communities evaluation framework, data analysis is structured around longitudinal and comparative axes to assess the evolution of community engagement over time and to explore the contextual factors influencing the process of community engagement and its impacts according to local context. Ethic: This research is approved by the research ethics board of the Centre hospitalier de l'Université de Montréal (approval certificate #18.353). Discussion: Understanding the process of community engagement in two compassionate communities will contribute to a deeper understanding of the relationships between local context, community engagement processes, and their effect on compassionate communities outcomes.

Improving Palliative Care and Medical Assistance in Dying Practice in Canada: How Patients-Partners Could Contribute to Continuing Medical Education.

Medical Assistance in Dying (MAiD) is still considered an evolving practice in Canada. Practitioners are facing the challenge of staying up to date and hence need efficient continuing medical education (CME). A patient-partner has been recently invited as a keynote speaker to CME activities in Canada to share her perspectives and views about patient engagement in palliative care and MAiD practice, calling for compassion. To our knowledge, few data exist on patient-partners' contribution to CME on these topics. Based on that experience, we discuss different issues on patient engagement's contribution in such CME events and call for further research.

How compassionate communities are implemented and evaluated in practice: a scoping review.

BACKGROUND: Compassionate communities are rooted in a health promotion approach to palliative care, aiming to support solidarity among community members at the end of life. Hundreds of compassionate communities have been developed internationally in recent years. However, it remains unknown how their implementation on the ground aligns with core strategies of health promotion. The aim of this review is to describe the practical implementation and evaluation of compassionate communities. METHODS: We undertook a scoping review of the empirical peer-reviewed literature on compassionate communities. Bibliographic searches in five databases were developed with information specialists. We included studies in English describing health promotion activities applied to end-of-life and palliative care. Qualitative analysis used inductive and deductive strategies based on existing frameworks for categorization of health promotion activities, barriers and facilitators for implementation and evaluation measures. A participatory research approach with community partners was used to design the review and interpret its findings. RESULTS: Sixty-three articles were included for analysis. 74.6% were published after 2011. Health services organizations and providers are most often engaged as compassionate community leaders, with community members mainly engaged as target users. Adaptation to local culture and social context is the most frequently reported barrier for implementation, with support and external factors mostly reported as facilitators. Early stages of compassionate community development are rarely reported in the literature (stakeholder mobilization, needs assessment, priority-setting). Health promotion strategies tend to focus on the development of personal skills, mainly through the use of education and awareness programs. Few activities focused on strengthening community action and building healthy public policies. Evaluation was reported in 30% of articles, 88% of evaluation being analyzed at the individual level, as opposed to community processes and outcomes. CONCLUSIONS: The empirical literature on compassionate communities demonstrates a wide variety of health promotion practices. Much international experience has been developed in education and awareness programs on death and dying. Health promotion strategies based on community strengthening and policies need to be consolidated. Future research should pay attention to community-led initiatives and evaluations that may not be currently reported in the peer-review literature.

Establishing patient-partner priorities within the primary and integrated health care innovations network in Canada.

Background: Many experienced primary care researchers have seen the benefits of meaningful engagement with patients and community members in their research, elevating them to a research partner status. The research questions and agendas, however, are often initiated and determined by the researchers. Increasingly, research teams, organizations and networks actively engage with patient-partners to better understand what their research priorities would look like, bringing patient-partners into the research process much earlier. Among many other initiatives within the Strategy for Patient Oriented Research program, a Primary and Integrated Health Care Innovations Network (PIHCIN) was established in Canada, which includes 11 geographically distributed research networks. As part of PIHCIN, a Pan-Canadian Patient Council (the Council) was established with representatives from each provincial site. To ensure their voices were being heard, the Council decided to establish their own research priorities for consideration by the PIHCI network. Objective: To establish patient-partner priorities in the Canadian primary health care context Methods: The main goal of the Council was to submit research priorities to identify what was important from a patient-partner perspective. Through consensus building and prioritization voting, the Council developed and presented a draft of their research priorities to the PIHCI Network Leadership Council. In a second step, the Council decided that the process was missing from the document. Subsequently, with the use of the SMART goal framework, the Council engaged in a process to establish how research priorities could be accomplished. Results: The initial research priorities comprised 11 items, including priorities concerning patient's access to data, integrated health teams, patient initiated collaborative research, virtual care, broader definition of health, etc. The initial priorities eventually evolved into a set of principles, strategic operating goals, and finalized research priorities. Conclusion: Through an iterative process, the Council was able to lead, initiate and differentiate strategic operating goals from the research priorities. This process and results can provide insight for developing critical input from patient-partners for primary health care research.

Demonstrating the complexity of patient-partnered research in primary care: a snapshot of patient-partners.

Background: In Canada, we are still struggling to achieve the critical goal of enabling performant health care systems that moves research results to real-world impact particularly for primary care. To address this, we have created a primary care research network where patient partners are involved in all levels of decision making for governance, research, and innovation. For many researchers, however, it is unclear what primary care patient-partners 'brings to the table.' As the Pan-Canadian Patient Council of the Primary and Integrated Health Care Innovations Network, we wanted to provide insight into the richness of expertise and experience patient partners contribute. Objectives: To provide an example of the characteristics, history and lived experience that patient-partners in a primary care research network represent and demonstrate the resource this presents. Methods: As current council members, representing 10 provinces, we developed a survey of our demographics, personal history and experience in patient-oriented research using iterative, collaborative meetings. The answers to the questions provided "snapshots" for each of us. As a group, we worked with researchers to descriptively and thematically analyze the responses to provide insight and a description of primary care research patient partners. Results: With 2 men and 8 women, we represented an average of 42.5 years of experience with health conditions (range 10-84 years) including cancer, genetic conditions, and multiple chronic diseases. On average, we worked with 4.7 different organizations each (range 2-9) on research topics covering the spectrum of primary care. Many of us acted as mentors for researchers and trainees. All of us were innovators and influencers with demonstrated leadership skills. A need for more diversity in terms of age and underrepresented minorities was noted. Conclusion: Diversity of life experience, extensive exposure to the health care system and strong engagement with multiple organizations for primary care research characterized us as patient-partners. This lived expertise represents a significant asset for researchers. This work should encourage researchers to starting thinking about how to include primary care patient-partners as a crucial resource in health research.

Changing relationships: how does patient involvement transform professional identity? An ethnographic study.

OBJECTIVES: To understand identity tensions experienced by health professionals when patient partners join a quality improvement committee. DESIGN: Qualitative ethnographic study based on participatory observation. SETTING: An interdisciplinary quality improvement committee of a Canadian urban academic family medicine clinic with little previous experience in patient partnership. PARTICIPANTS: Two patient partners, seven health professionals (two family physicians, two residents, one pharmacist, one nurse clinician and one nurse practitioner) and three members of the administrative team. DATA COLLECTION: Data collection included compiled participatory observations, logbook notes and semi-structured interviews, collected between the summer of 2017 to the summer of 2019. DATA ANALYSIS: Ghadiri's identity threats theoretical framework was used to analyse qualitative material and to develop conceptualising categories, using QDA Miner software (V.5.0). RESULTS: All professionals with a clinical care role and patient partners (n=9) accepted to participate in the ethnographic study and semi-structured interviews (RR=100%). Transforming the 'caregiver-patient' relationship into a 'colleague-colleague' relationship generated identity upheavals among professionals. Identity tensions included competing ideals of the 'good professional', challenges to the impermeability of the patient and professional categories, the interweaving of symbols associated with one or the other of these identities, and the inner balance between the roles of caregiver and colleague. CONCLUSION: This research provides a new perspective on understanding how working in partnership with patients transform health professionals' identity. When they are called to work with patients outside of a simple therapeutic relationship, health professionals may feel tensions between their identity as caregivers and their identity as colleague. This allows us to better understand some underlying tensions elicited by the arrival of different patient engagement initiatives (eg, professionals' resistance to working with patients, patients' status and remuneration, professionals' concerns toward patient 'representativeness'). Partnership with patients imply the construction of a new relational framework, flexible and dynamic, that takes into account this coexistence of identities.

Information needs of francophone health care professionals and the public with regard to medical assistance in dying in Quebec: a qualitative study.

BACKGROUND: In 2016, the Canadian government legalized medical assistance in dying (MAiD) for adults with terminal illness. The objective of this study was to explore the information needs of health care professionals and members of the public regarding MAiD. METHODS: This was a qualitative study involving a 1-day face-to-face forum followed by a 3-week online forum across the province of Quebec conducted in June 2016. French-speaking participants targeted for the study included members of the public (citizens, patients and caregivers) and health care professionals. Participants were recruited through calls for applications to a patient partner network and via social media, and through mailing lists of partner professional and community organizations across Quebec. We used a purposeful sampling strategy to recruit a diverse group of participants. In the forums, deliberations were prompted by short informational videos about MAiD. We performed a thematic analysis to identify key information needs. RESULTS: Fifty members of the public and 35 health care professionals participated. Forty-three people participated in the face-to-face meeting, and 42 people participated online. Participants identified 32 information needs (22 expressed by both members of the public and health care professionals, and 10 specific to members of the public) regarding the definition of MAiD, eligibility criteria, and documenting and evaluating practices. Information needs varied along different stages of the patient's journey. Participants expressed the need to be informed about issues that go beyond the medical and legal aspects of MAiD (e.g., relational, symbolic, psychological and spiritual aspects). INTERPRETATION: The findings show that health care professionals and members of the public have common information needs regarding MAiD and seek information on the relational, emotional and symbolic aspects of this practice. These findings call for concerted efforts to build a common information base - covering dimensions that go beyond the medical and legal aspects of MAiD - to facilitate informed conversations among patients, health care professionals and members of the public.