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Plain English summaryPatient engagement in research is an emerging approach that involves active and meaningful collaboration between researchers and patients throughout all phases of a project, including planning, data collection and analysis, and sharing of findings. To better understand the core features (elements) that underlie patient engagement, it is useful to have a look at models and frameworks that guide its conduct. Therefore, this manuscript aims to present a protocol for a scoping review of models and frameworks of patient engagement in health services research. Methods: Our protocol design is based on an established framework for conducting scoping reviews. We will identify relevant models and frameworks through systematic searches of electronic databases, websites, reference lists of included articles, and correspondence with colleagues and experts. We will include published and unpublished articles that present models and frameworks of patient engagement in health services research and exclude those not in English or unavailable as full texts. Two reviewers will independently review abstracts and full texts of identified articles for inclusion and extract relevant data; a third reviewer will resolve discrepancies. Our primary objective is to count and describe elements of patient engagement that overlap (present in 2 or more) and diverge among included models and frameworks. Discussion: We hope this review will raise awareness of existing models and frameworks of patient engagement in health services research. Further, by identifying elements that overlap and diverge between models and frameworks, this review will contribute to a clearer understanding of what patient engagement in research is and/or could be.AbstractBackground: Patients can bring an expert voice to healthcare research through their lived experience of receiving healthcare services. Patient engagement in research is an emerging approach that challenges researchers to acknowledge and utilize this expertise through meaningful and active collaboration with patients throughout the research process. In order to facilitate a clearer understanding of the core elements that underlie patient engagement, it is useful to examine existing models and frameworks that guide its conduct. Therefore, the aim of this manuscript is to present a protocol for a scoping review of models and frameworks of patient engagement in health services research. Methods: Drawing on Arksey and O’Malley’s and Levac et al.’s framework for scoping reviews, we designed our protocol to identify relevant a) published articles through systematic searches of 7 electronic databases and snowball sampling and b) unpublished articles through systematic searches of databases and websites and snowball sampling. We will include published and unpublished models and frameworks of patient engagement in health services research and exclude those not in English or unavailable as full texts. Two reviewers will independently screen the abstracts and full texts of identified articles for ...

ObjectiveTo count and describe the elements that overlap (ie, present in two or more) and diverge between models and frameworks of patient engagement in health services research. Our specific research question was ‘what are the elements that underlie models and frameworks of patient engagement in health services research?’DesignScoping review.Data sourcesOn 6–7 July 2021, we searched six electronic databases (ie, CINAHL, Cochrane Database of Systematic Reviews, Joanna Briggs Institute Evidence Based Practice Database, MEDLINE, PsycINFO and Scopus) and Google Scholar for published literature, and ProQuest Dissertations & Theses, Conference Proceedings Citation Index, Google, and key agencies’ websites for unpublished (ie, grey) literature, with no date restrictions. These searches were supplemented by snowball sampling.Eligibility criteriaWe included published and unpublished literature that presented (a) models or frameworks (b) of patient engagement (c) in health services research. We excluded articles unavailable as full text or not written in English.Data extraction and synthesisTwo independent reviewers extracted data from included articles using an a priori developed standardised form. Data were synthesised using both quantitative (ie, counts) and qualitative (ie, mapping) analyses.ResultsWe identified a total of 8069 articles and ultimately included 14 models and frameworks in the review. These models and frameworks were comprised of 18 overlapping and 57 diverging elements, that were organised into six conceptual categories (ie, principles, foundational components, contexts, actions, levels and outcomes) and spanned intrapersonal, interpersonal, process, environmental, and health systems and outcomes domains.ConclusionsThere is little overlap between the elements that comprise existing models and frameworks of patient engagement in health services research. Those seeking to apply these models and frameworks should consider the ‘fit’ of each element, by conceptual category and domain, within the context of their study.

Advances have been made to improve health care for children with complex health conditions (CCHCs); however, little is known of the needs of these children and their families in the Canadian context. In this article, we describe our Canadian Institutes of Health Research funded Quick Strike protocol, a mixed-methods multisite research project that explored CCHC and their families in two Canadian provinces. The aims were (a) to describe and define CCHC, (b) to understand the needs of CCHC and their families, (c) to identify gaps and barriers to services for this population, and (d) to adapt and test the application of a computerized algorithm to yield information on CCHC. The mixed-methods design was comprised of four components: three qualitative and one quantitative. We describe the components of this project and outline the methods and procedures of data collection and analysis for each component. One of the main sources of data was interviews from 121 stakeholders, which included CCHC and family members, as well as health, social, and education professionals. This Quick Strike project was designed to engage stakeholders and the public with integrated knowledge translation threaded as a core element throughout the research process. Multiple strategies were used to validate and disseminate early findings from the research. As we outline in this article, this research project provided the foundation for one innovative service model of care, NaviCare/SoinsNavi, and spawned a number of additional outcomes such as a secondary analysis of the data to describe interprofessional collaboration for CCHC.

Background Knowledge about the specific engagement activities pursued and associated impacts of patient engagement in research in Canada remains nascent. This study aimed to describe engagement activities and perceived impacts of projects funded by the Strategy for Patient-Oriented Research (SPOR). Methods This was a cross-sectional online survey of academic researchers and patient partners engaging in projects funded through 13 SPOR funding calls (2014–2019). Patient engagement activities and impacts were measured using a self-developed survey. Thematic analysis was used to describe engagement activities and impacts. Results 66 of 511 academic researchers and 20 of 28 patient partners contacted completed the survey and were included in analyses. Respondents reported that patient partners were engaged in seven types of activities across the research cycle: (a) sharing experiences/giving advice, (b) identifying the research focus/methods, (c) developing/revising aspects of the project, (d) conducting research activities, (e) study participation, (f) presenting on behalf of the project, and (g) other grant development or knowledge translation activities. Engagement was associated with six different types of impacts related to knowledge, outputs, or directions being (a) created, (b) moulded, (c) confirmed, or (d) chosen/prioritized, (e) perceived success of the research, and (f) minimal/negative impacts on the research. Conclusions This study presents information on different ways that patient partners were engaged in SPOR-funded research and the potential impacts of these activities. This knowledge base is imperative to the future of patient engagement in research, including the planning and evaluation of future studies that engage patients as active shapers of research.

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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 patientpartners 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.

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 patientpartners 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.