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Conceptualising, operationalising and measuring trust in participatory health research networks: a scoping review protocol.

ABSTRACT: INTRODUCTION:A 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 ANALYSIS:This 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 DISSEMINATION:Ethics 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.

SUBMITTER: Gilfoyle M

PROVIDER: S-EPMC7597520 | biostudies-literature | 2020 Oct

REPOSITORIES: biostudies-literature

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Conceptualising, operationalising and measuring trust in participatory health research networks: a scoping review protocol.

Gilfoyle Meghan M MacFarlane Anne A Salsberg Jon J

BMJ open 20201029 10

<h4>Introduction</h4>A 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 'tr ...[more]

PMID: 33122318

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Project description:BackgroundThere 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.MethodsThis 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.ResultsBased 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.ConclusionsFindings 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.

Project description:IntroductionParticipatory 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.Materials and methodsThis 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.Ethics and disseminationAs 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.

Project description:BackgroundData harmonisation is an important intervention to strengthen health systems functioning. It has the potential to enhance the production, accessibility and utilisation of routine health information for clinical and service management decision-making. It is important to understand the range of definitions and concepts of data harmonisation, as well as how its various social and technical components and processes are thought to lead to better health management decision-making. However, there is lack of agreement in the literature, and in practice, on definitions and conceptualisations of data harmonisation, making it difficult for health system decision-makers and researchers to design, implement, evaluate and compare data harmonisation interventions. This scoping review aims to synthesise (1) definitions and conceptualisations of data harmonisation as well as (2) explanations in the literature of the causal relationships between data harmonisation and health management decision-making.MethodsThis review follows recommended methodological stages for scoping studies. We will identify relevant studies (peer-reviewed and grey literature) from 2000 onwards, in English only, and with no methodological restriction, in various electronic databases, such as CINAHL, MEDLINE via PubMed and Global Health. Two reviewers will independently screen records for potential inclusion for the abstract and full-text screening stages. One reviewer will do the data extraction, analysis and synthesis, with built-in reliability checks from the rest of the team. We will use a combination of sampling techniques, including two types of 'purposeful sampling', a methodological approach that is particularly suitable for a scoping review with our objectives. We will provide (a) a numerical synthesis of characteristics of the included studies and (b) a narrative synthesis of definitions and explanations in the literature of the relationship between data harmonisation and health management decision-making.DiscussionWe list potential limitations of this scoping review. To our knowledge, this scoping review will be the first to synthesise definitions and conceptualisations of data harmonisation in the literature as well as the underlying explanations in the literature of the causal links between data harmonisation and health management decision-making.

Project description:IntroductionAdvancements 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 aimThe 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 participantsParticipants 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.AnalysisFollowing Braun and Clarke, we used reflexive thematic analysis, to iteratively develop, analyse and interpret our mediated reflection of the data.ResultsParticipants 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.DiscussionGiven 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 contributionA 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).

Project description:PurposeThis study is a scoping review of the different methods used to measure rurality in the health services research (HSR) literature.MethodsWe identified peer-reviewed empirical studies from 2010-2020 from seven leading HSR journals, including the Journal of Rural Health, that used any definition to measure rurality as a part of their analysis. From each study, we identified the geographic unit (e.g., county, zip code) and definition (e.g., Rural Urban Continuum Codes, Rural Urban Commuting Areas) used to classify categories of rurality. We analyzed whether geographic units and definitions used to classify rurality differed by focus area of studies, including costs, quality, and access to care. Lastly, we examined the number of rural categories used by authors to assess rural areas.FindingsIn 103 included studies, five different geographic units and 11 definitions were used to measure rurality. The most common geographic units used to measure rurality were county (n = 59, 57%), which was used most frequently in studies examining cost (n = 12, 75%) and access (n = 33, 57.9%). Rural Urban Commuting Area codes were the most common definition used to measure rurality for studies examining access (n = 13, 22.8%) and quality (n = 10, 44%). The majority of included studies made rural versus urban comparisons (n = 82, 80%) as opposed to focusing on rural populations only (n = 21, 20%). Among studies that compared rural and urban populations, most studies used only one category to identify rural locations (n = 49 of 82 studies, 60%).ConclusionGeographic units and definitions to determine rurality were used inconsistently within and across studies with an HSR focus. This finding may affect how health disparities by rural location are determined and thus how resources and federal funds are allocated. Future research should focus on developing a standardized system to determine under what circumstances researchers should use different geographic units and methods to determine rurality by HSR focus area.

Project description:IntroductionNursing research competence of nursing personnel has received much attention in recent years, as nursing has developed as both an independent academic discipline and an evidence-based practiing profession. Instruments for appraising nursing research competence are important, as they can be used to assess nursing research competence of the target population, showing changes of this variable over time and measuring the effectiveness of interventions for improving nursing research competence. There is a need to map the current state of the science of the instruments for nursing research competence, and to identify well validated and reliable instruments. This paper describes a protocol for a scoping review to identify, evaluate, compare and summarise the instruments designed to measure nursing research competence.Methods and analysisThe scoping review will be conducted following Arksey and O'Malley's methodological framework and Levac et al's additional recommendations for applying this framework. The scoping review will be reported according to the Preferred Reporting Items for Systematic Reviews and Meta-Analyses extension for Scoping Reviews checklist. The protocol is registered through the Open Science Framework (https://osf.io/ksh43/). Eight English databases and two Chinese databases will be searched between 1 December 2020 and 31 December 2020 to retrieve manuscripts which include instrument(s) of nursing research competence. The literature screening and data extraction will be conducted by two researchers, independently. A third researcher will be involved when consensus is needed. The COnsensus-based Standards for the selection of health Measurement INstruments methodology will be used to evaluate the methodological quality of the included studies on measurement properties of the instruments, as well as the quality of all the instruments identified.Ethics and disseminationEthical approval is not needed. We will disseminate the findings through a conference focusing on nursing research competence and publication of the results in a peer-reviewed journal.

Project description:BackgroundThere is a complicated and exploitative history of research with Indigenous peoples and accompanying calls to meaningfully and respectfully include Indigenous knowledge in healthcare. Storytelling approaches that privilege Indigenous voices can be a useful tool to break the hold that Western worldviews have within the research. Our collaborative team of Indigenous and non-Indigenous researchers, and Indigenous patients, Elders, healthcare providers, and administrators, will conduct a critical participatory, scoping review to identify and examine how storytelling has been used as a method in Indigenous health research.MethodsGuided by two-eyed seeing, we will use Bassett and McGibbon's adaption of Arksey and O'Malley's scoping review methodology. Relevant articles will be identified through a systematic search of the gray literature, core Indigenous health journals, and online databases including Scopus, MEDLINE, Embase, CINAHL, AgeLine, Academic Search Complete, Bibliography of Native North Americans, Canadian Reference Centre, and PsycINFO. Qualitative and mixed-methods research articles will be included if the researchers involved Indigenous participants or their healthcare professionals living in Turtle Island (i.e., Canada and the USA), Australia, or Aotearoa (New Zealand); use storytelling as a research method; focus on healthcare phenomena; and are written in English. Two reviewers will independently screen titles/abstracts and full-text articles. We will extract data, identify the array of storytelling approaches, and critically examine how storytelling was valued and used. An intensive collaboration will be woven throughout all review stages as academic researchers co-create this work with Indigenous patients, Elders, healthcare professionals, and administrators. Participatory strategies will include four relational gatherings throughout the project. Based on our findings, we will co-create a framework to guide the respectful use of storytelling as a method in Indigenous health research involving Indigenous and non-Indigenous peoples.DiscussionThis work will enable us to elucidate the extent, range, and nature of storytelling within Indigenous health research, to critically reflect on how it has been and could be used, and to develop guidance for the respectful use of this method within research that involves Indigenous peoples and settlers. Our findings will enable the advancement of storytelling methods which meaningfully include Indigenous perspectives, practices, and priorities to benefit the health and wellbeing of Indigenous communities.Systematic review protocol registrationOpen Science Framework ( https://osf.io/rvf7q ).

Project description:IntroductionInternational policy recommends continuous, cost-effective monitoring of health data to enable health services to identify and respond to health inequities as experienced by different ethnic groups. However, there is a lack of routinely collected ethnicity data, particularly in primary care, and very little implementation research internationally to understand how ethnic identifiers are introduced, embedded and used in healthcare settings. This paper describes a protocol for a novel participatory health research project with the objective of building the evidence base on ethnic minority health in Ireland. Findings on the participatory appraisal of ethnic identifiers as an intervention to generate useful data about minority and majority ethnic groups will have relevance in other settings and countries.Methods and analysisThis multidisciplinary project is designed as a participatory health research study where all stakeholders, including ethnic minority communities, participate in co-design of the research protocol, project governance, collaborative data interpretation and disseminating findings. A national catalogue of all routinely collected health data repositories will be electronically searched for any repositories that contain information on ethnicity. A secondary quantitative analysis of a population-representative cohort study, Growing Up in Ireland, will be carried out to compare the health of ethnic minority and majority groups. A qualitative case study informed by normalisation process theory will be carried out at three primary care sites to monitor the implementation of an ethnic identifier and identify barriers and levers to implementation.Ethics and disseminationEthical approval for the qualitative case study has been granted by the Irish Council for General Practitioners (06/09/17). Permission to access data from Growing Up in Ireland has been granted by the Director General of the Central Statistics Office. Dissemination will be carried out at community events and academic conferences, in peer-reviewed journal publications, and through academic and healthcare provider networks.

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Conceptualising, operationalising and measuring trust in participatory health research networks: a scoping review protocol.

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Conceptualising, operationalising and measuring trust in participatory health research networks: a scoping review protocol.

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