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ObjectivesThe objectives of this scoping review are to: (1) identify the distribution of and context of the recruitment strategies used, (2) explore the facilitators, benefits, barriers and ethical issues of the identified recruitment strategies, (3) distinguish the varying terminology for involvement (ie, panels, boards, individual) and (4) determine if the individual recruitment strategies used were to address issues of representation or bias.DesignA scoping review.SettingThis scoping review follows the framework by Peters et al. Seven electronic databases were explored including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library and PsycINFO (conducted July 2021). The search strategy was codeveloped among the research team, PPI research experts and a faculty librarian. Two independent reviewers screened articles by title and abstract and then at full text based on predetermined criteria.Primary and secondary outcome measuresExplore recruitment strategies used, facilitators, benefits, barriers and ethical issues of the identified recruitment strategies. Identify terminology for involvement. Explore recruitment strategies used to address issues of representation or bias.ResultsThe final sample was from 51 sources. A large portion of the extracted empirical literature had a clinical focus (37%, n=13) but was not a randomised control trial. The most common recruitment strategies used were human networks (78%, n=40), such as word of mouth, foundation affiliation, existing networks, clinics or personal contacts. Within the reviewed literature, there was a lack of discussion pertaining to facilitators, benefits, barriers and ethical considerations of recruitment strategies was apparent. Finally, 41% (n=21) of studies employed or proposed recruitment strategies or considerations to address issues of representation or bias.ConclusionWe conclude with four key recommendations that researchers can use to better understand appropriate routes to meaningfully involve patients, carers and members of the public to cocreate the evidence informing their care.

Introduction Advancements in evaluating the impact of participatory health research (PHR) have been made through comprehensive models like the community‐based participatory research (CBPR) conceptual model, which provides a useful framework for exploring how context and partnership processes can influence health research design and interventions. However, challenges in operationalising aspects of the model limit our understanding and evaluation of the PHR process. Trust is frequently identified as an important component of the CBPR model, which supports the development of key partnership outcomes, such as partnership synergy. However, trust continues to be limited to a binary view (as present or absent), which is problematic given its inherently dynamic and temporal nature. Study Aim The aim of this qualitative study is to understand the evolution of trust in the national public and patient involvement (PPI) network in Ireland. Setting and Participants Participants from the PPI network (n = 15/21) completed a semistructured interview discussing the evolution of trust by reviewing four social network maps derived from a previous longitudinal study. Analysis Following Braun and Clarke, we used reflexive thematic analysis, to iteratively develop, analyse and interpret our mediated reflection of the data. Results Participants described the evolution of trust as a function of three contextual factors: (1) the set‐up and organisation of the network, (2) how people work together and (3) reflection on the process and outcomes. Their descriptions across these themes seemed to vary depending on partnership type with National Partners and Site Leads having more opportunities to demonstrate trust (e.g., via leadership roles or more resources), compared to Local. Thus, visibility and the opportunity to be visible, depending on the set‐up and organisation of the network and how people work together, seemingly play an important role in the evolution of trust over time. Based on these findings, we provide important questions for reflection across themes that could be considered for future PHR partnerships. Discussion Given that the opportunity and visibility to build and maintain trust over time may not be equally available to all partners, it is important to find ways to invest in and commit to equitable relationships as the key to the success (i.e., longevity) of partnerships. We reflect on/offer important implications for those engaging in PHR partnerships and those who fund such research. Patient or Public Contribution A Research Advisory Group comprising four research partners (representing academic, service and community organisations) from the PPI Ignite Network provided input and approval for the research objectives of this study as well as previously published work informing this study. Informal consultation occurred with members of this group to discuss findings from this study, assisting with the way findings are presented and described, to be accessible for diverse audiences. Two Research Advisory Group members were involved in the interpretation of the results, and one is a co‐author of this manuscript (Zoe Hughes).

Participatory health research (PHR) as a research paradigm, guides the research process and strives to achieve positive change in society in the interest of people's health. In this scoping review, PHR will be used as an umbrella term considering a wide range of collaborative research approaches in the health context. PHR is conducted 'with' or 'by' those it intends to benefit, as opposed to 'on' and 'for' them. Their involvement throughout the research process seeks to shift power and decision-making from where they traditionally lay within academia toward community, patient and public end-users. Research cannot be truly participatory without concurrently addressing power dynamics within the partnership and power imbalances in decision making. Therefore, power sharing can be defined as a major factor in building effective academic-community collaborations. This scoping review aims to identify, clarify, and map existing literature on power and power sharing in PHR from both theoretical and practical perspectives. Specifically, we will explore how power is conceptualised throughout the literature, and how power and power sharing are applied and addressed in real-life PHR partnerships. This scoping review will be conducted in accordance with the guidelines outlined in the Joanna Briggs Institute (JBI) Reviewer's Manual. This scoping review will consider both empirical and non-empirical research that report on understanding power and power sharing in participatory health research partnerships. All appropriate studies will be retrieved from the following five electronic databases: PubMed, Scopus, Embase, PsycINFO, SocIndex. This review will be limited to articles published in English and from January 1998 to March 2024. As the scoping review aims to capture more than peer-reviewed and published literature, it will also include grey literature such as theses and dissertations, reports, conference proceedings, and editorials. Data from the included literature will be extracted based on the data extraction tool, defined in advance. As primary data will not be collected, ethical approval is not required to conduct the scoping review. The findings of this study will be disseminated through peer-reviewed publications.

Access to healthcare in Canada remains a significant issue, with over one in five people lacking attachment to a regular primary care provider. To address this, patients, health professionals, researchers and policymakers are advocating for health system transformation aimed at improving access and achieving the quintuple aim. As a result, research funding increasingly prioritizes health system transformation. However, whilst collaborative approaches such as integrated knowledge translation (IKT) are critical for success, trainees face barriers to integrating patient and public engagement into their research. These challenges include limited time and resources, difficulties in developing meaningful partnerships, tensions between independent intellectual contributions and collaborative research and academic structures that reinforce power imbalances. This commentary presents four trainee experiences that demonstrate successful capacity-building initiatives for trainees to embed patient and public engagement in health system transformation research. The first case study focusses on the Patient Expertise in Research Collaboration (PERC), which supports Transdisciplinary Understanding and Training on Research-Primary Health Care (TUTOR-PHC) trainees in incorporating patient perspectives into primary healthcare research. The second highlights the role of the Integrated Knowledge Translation Research Network (IKTRN) in building trainee capacity through funding. The third explores a trainee experience with the ACCESS Open Minds Network (AOM). The fourth describes a trainee experience within a co-design study, the Enhancing Physical and Community MoBility in OLDEr Adults with Health Inequities Using CommuNity Co-Design (EMBOLDEN). These case studies provide insights into effective strategies for overcoming barriers to patient and public engagement in research. However, opportunities for such engagement remain uneven and depend on limited funding. To foster sustainable support, academic institutions must integrate these capacity-building initiatives, promoting a future of primary care in Canada that is inclusive, patient-centred and responsive to evolving population needs.

BackgroundThe value of a participatory approach to the generation of evidence for health and social services from a moral, methodological and policy level continues to gain recognition globally. Trust is a crucial mechanism in the participatory health research (PHR) process and is strongly influenced by context. However, gaps remain in conceptualising and operationalising trust over time in PHR partnerships.ObjectiveThis case study seeks to address these gaps by exploring the evolution of trust multidimensionally across two timepoints.Setting and participantsParticipants in a PHR project called the Public and Patient Involvement (PPI) Ignite Network in Ireland (n=57 (T1); n=56 (T2)) were invited to complete a network survey at two timepoints. The PPI Ignite Network had local and national partners.Network measuresSeveral core social network measures were calculated at both timepoints to characterise the differences between trust dimensions and between local and national partners.ResultsSubtle changes were observed across most network measures over the two timepoints. While there was a slight decrease in the number of connections for each trust dimension throughout the PPI Ignite Network, connections that were consistently nominated in both timepoints increased slightly. Some trust dimensions, such as vulnerability and integrity, were more similar, while others, like integrity and shared values, visions and goals, differed greatly, where national partners consistently received more incoming connections compared with local partners.ConclusionThese findings (1) provide empirical support for using social network analysis to operationalise trust comprehensively and multidimensionally over time in a participatory partnership, (2) offer nuanced insights into the trust development process within the PPI Ignite Network and (3) enhance our understanding of trust in the community-based participatory research model.

IntroductionEngaging patients, carers and members of the public in health research has become widely recognised as an important approach for bridging the gap between research, and health and social care by increasing the relevance of research for those who benefit from its findings. Specific approaches to engagement vary, but commonly include advisory boards, groups or patient panels that are active throughout all stages of research. The breadth of and optimal strategies for recruiting patients, carers and members of the public to such boards, groups or panels remains unclear. The objective of this manuscript is to identify the breadth of and optimal strategies used to recruit patients, carers and members of the public to advisory boards, groups or panels, within public and patient involvement (PPI) research.Methods and analysisThis review follows the scoping review framework by Peters et al, an elaboration on the framework by Arksey and O’Malley. The search strategy was co-developed among the research team, PPI research experts and a faculty librarian. The review will take place between July 2021 and June 2022. In July and August 2021, eight electronic databases, MEDLINE (PubMed), MEDLINE (OVID), Embase, CINAHL, PsychINFO, Scopus, Web of Science and Cochrane Library, will be explored to capture all available literature. Two independent reviewers will screen articles by title and abstract and then at full text based on predetermined criteria. The data will be presented in a tabular format with a narrative summary discussing how the research findings relate to the overarching research question. A thematic analysis will also be completed using qualitative description, identifying key themes and gaps in the literature.Ethics and disseminationEthics is not required for this review. We aim to disseminate the information gathered through presentations at academic conferences, peer-reviewed publications and consultations with lay audiences.

Background There are many described benefits of community-based participatory research (CBPR), such as increased relevance of research for those who must act on its findings. This has prompted researchers to better understand how CBPR functions to achieve these benefits through building sustainable research partnerships. Several studies have identified “trust” as a key mechanism to achieve sustainable partnerships, which themselves constitute social networks. Although existing literature discusses trust and CBPR , or trust and social networks , preliminary searches reveal that none link all three concepts of trust , CBPR , and social networks. Thus, we present our scoping review to systematically review and synthesize the literature exploring how trust is conceptualised, operationalised, and measured in CBPR and social networks. Methods This review follows the guidance and framework of Peters et al. which is underpinned by the widely used framework of Levac and colleagues. Levac and colleagues provided enhancements to the methodological framework of Arksey and O’Malley. We explored several electronic databases including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library, Google Scholar, and PsychINFO. A search strategy was identified and agreed upon by the team in conjunction with a research librarian. Two independent reviewers screened articles by title and abstract, then by full-text based on pre-determined exclusion/inclusion criteria. A third reviewer arbitrated discrepancies regarding inclusions/exclusions. A thematic analysis was then conducted to identify relevant themes and sub-themes. Results Based on the 26 extracted references, several key themes and sub-themes were identified which highlighted the complexity and multidimensionality of trust as a concept. Our analysis revealed an additional emergent category that highlighted another important dimension of trust—outcomes pertaining to trust. Further, variation within how the studies conceptualised, operationalised, and measured trust was illuminated. Finally, the multidimensionality of trust provided important insight into how trust operates as a context, mechanism, and outcome. Conclusions Findings provide support for future research to incorporate trust as a lens to explore the social-relational aspects of partnerships and the scope to develop interventions to support trust in partnerships.

IntroductionA participatory approach to co-creating new knowledge in health research has gained significant momentum in recent decades. This is founded on the described benefits of community-based participatory research (CBPR), such as increased relevance of research for those who must act on its findings. This has prompted researchers to better understand how CBPR functions to achieve these benefits through building sustainable research partnerships. Several studies have identified ‘trust’ as a key mechanism to achieve sustainable partnerships, which themselves constitute social networks. Although existing literature discuss trust and CBPR, or trust and social networks, preliminary searches reveal that none link all three concepts of trust, CBPR and social networks. Thus, we present our scoping review protocol to systematically review and synthesise the literature exploring how trust is conceptualised, operationalised and measured in CBPR and social networks.Methods and analysisThis protocol follows guidelines from Levac et al (Scoping studies: advancing themethodology. Implement Sci 2010;5:69), which follow the methodological framework of Arksey and O’Malley. This scoping review explores several electronic databases including Scopus, Medline, PubMed, Web of Science, CINAHL, Cochrane Library, Google Scholar and PsychINFO. Grey literature such as theses/dissertations and reports will be included. A search strategy was identified and agreed on by the team in conjunction with a research librarian. Two independent reviewers will screen articles by title and abstract, then by full text based on pre-determined exclusion/inclusion criteria. A third reviewer will arbitrate discrepancies regarding inclusions/exclusions. We plan to incorporate a thematic analysis.Ethics and disseminationEthics is not required for this review specifically. It is a component of a larger study that received ethical approval from the University of Limerick research ethics committee (#2018_05_12_EHS). Translation of results to key domains is integrated through active collaboration of stakeholders from community, health services and academic sectors. Findings will be disseminated through academic conferences, and peer review publications targeting public and patient involvement in health research.

Supporting refugee and migrant health has become a critical focus of healthcare policy. Developing and designing health literacy interventions that meet the needs of refugees and migrants is core to achieving this objective. This literature review sought to identify antecedents and consequences of health literacy among refugees and migrants during the first two years of the COVID-19 pandemic. We systematically searched nine electronic databases and numerous grey literature sources to identify studies published between December 2019 and March 2022. The antecedents (societal and environmental determinants, situational determinants, and personal determinants) and consequences of health literacy among refugees and migrants were mapped to a validated integrated health literacy model. Social and environmental determinants (n equivalent 35) were the most reported antecedent influencing health literacy among refugees and migrants during the first two years of COVID-19. Language (n equivalent 26) and culture (n equivalent 16) were these determinants' most frequently reported aspects. Situational determinants (n equivalent 24) and personal determinants (n equivalent 26) were less frequently identified factors influencing health literacy among refugees and migrants. Literacy (n equivalent 11) and socioeconomic status (n equivalent 8) were the most frequently reported aspects of personal determinants. Media use (n equivalent 9) and family and peer influence (n equivalent 7) were the most cited situational determinants reported. Refugees and migrants with higher levels of health literacy were more likely to use healthcare services, resulting in better health outcomes. The findings of this review reveal personal and situational factors that impacted health literacy among refugees and migrants during COVID-19 that require attention. However, the inadequate adaptation of health literacy interventions for linguistic and cultural diversity was a greater problem. Attention to this well-known aspect of public health preparedness and tailoring health literacy interventions to the needs of refugees and migrants during pandemics and other public health emergencies are paramount.

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.