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A Systematic Review of the Impact of Patient and Public Involvement on Service Users, Researchers and Communities
by
Herron-Marx, Sandra
,
Mockford, Carole
,
Brett, Jo
in
Biomedical Research - organization & administration
,
Community Participation - methods
,
Community-Based Participatory Research - organization & administration
2014
Objective
Patient and public involvement (PPI) in research has expanded nationally and internationally over the last decade, and recently there has been significant attention given to understanding its impact on research. Less attention has been given to the impact of PPI on the people involved, yet it has been shown that the success of PPI in research can be reliant on the processes of engagement between these individuals and communities. This paper therefore critically explores the impact of PPI on service users, researchers and communities involved in health and social care research.
Data Sources
Searches were undertaken from 1995 to April 2012 in the electronic databases MEDLINE, EMBASE, PsycINFO, Cochrane library, CINAHL, HMIC and HELMIS. Searches were undertaken for grey literature using the databases InvoNet and NHS Evidence.
Study Selection
Studies were included if they included the impact of PPI on individual service users, researchers or communities under research. Studies were excluded if they were in a foreign language (unless they were deemed critical to the systematic review) or were in children and adolescent services.
Study Appraisal
Data were extracted using a narrative synthesis, and quality was assessed using the Critical Appraisal Skills Programme.
Main Results
Service users reported feeling empowered and valued, gaining confidence and life skills. Researchers developed a greater understanding and insight into their research area, gaining respect and a good rapport with the community. The community involved in research became more aware and knowledgeable about their condition. However, lack of preparation and training led some service users to feel unable to contribute to the research, while other service users and communities reported feeling overburdened with the work involved. Researchers reported difficulties in incorporating PPI in meaningful ways due to lack of money and time.
Conclusion
This is the first international systematic review to focus on the impact of PPI on the people involved in the process. The beneficial and challenging impacts reported highlight the importance of optimising the context and processes of involvement, so creating the potential for PPI to impact positively on the research itself.
Journal Article
Research co-design in health: a rapid overview of reviews
by
Saeri, Alexander K.
,
Slattery, Peter
,
Bragge, Peter
in
Biomedical Research - organization & administration
,
Co-design
,
Collaboration
2020
Background
Billions of dollars are lost annually in health research that fails to create meaningful benefits for patients. Engaging in research co-design – the meaningful involvement of end-users in research – may help address this research waste. This rapid overview of reviews addressed three related questions, namely (1) what approaches to research co-design exist in health settings? (2) What activities do these research co-design approaches involve? (3) What do we know about the effectiveness of existing research co-design approaches? The review focused on the study planning phase of research, defined as the point up to which the research question and study design are finalised.
Methods
Reviews of research co-design were systematically identified using a rapid overview of reviews approach (PROSPERO: CRD42019123034). The search strategy encompassed three academic databases, three grey literature databases, and a hand-search of the journal
Research Involvement and Engagement
. Two reviewers independently conducted the screening and data extraction and resolved disagreements through discussion. Disputes were resolved through discussion with a senior author (PB). One reviewer performed quality assessment. The results were narratively synthesised.
Results
A total of 26 records (reporting on 23 reviews) met the inclusion criteria. Reviews varied widely in their application of ‘research co-design’ and their application contexts, scope and theoretical foci. The research co-design approaches identified involved interactions with end-users outside of study planning, such as recruitment and dissemination. Activities involved in research co-design included focus groups, interviews and surveys. The effectiveness of research co-design has rarely been evaluated empirically or experimentally; however, qualitative exploration has described the positive and negative outcomes associated with co-design. The research provided many recommendations for conducting research co-design, including training participating end-users in research skills, having regular communication between researchers and end-users, setting clear end-user expectations, and assigning set roles to all parties involved in co-design.
Conclusions
Research co-design appears to be widely used but seldom described or evaluated in detail. Though it has rarely been tested empirically or experimentally, existing research suggests that it can benefit researchers, practitioners, research processes and research outcomes. Realising the potential of research co-design may require the development of clearer and more consistent terminology, better reporting of the activities involved and better evaluation.
Journal Article
Civic labors : scholar activism and working-class studies
\"Labor studies scholars and working-class historians have long worked at the crossroads of academia and activism. The essays in this collection examine the challenges and opportunities for engaged scholarship in the United States and abroad. A diverse roster of contributors discuss how participation in current labor and social struggles guides their campus and community organizing, public history initiatives, teaching, mentoring, and other activities. They also explore the role of research and scholarship in social change, while acknowledging that intellectual labor complements but never replaces collective action and movement building. Contributors: Kristen Anderson, Daniel E. Atkinson, James R. Barrett, Susan Roth Breitzer, Susan Chandler, Sam Davies, Dennis Deslippe, Eric Fure-Slocum, Colin Gordon, Michael Innis-Jimأƒآ©nez, Stephanie Luce, Joseph A. McCartin, John W. McKerley, Matthew M. Mettler, Stephen Meyer, David Montgomery, Kim E. Nielsen, Peter Rachleff, Ralph Scharnau, Jennifer Sherer, Shelton Stromquist, Emily E. LB. Twarog, and John Williams-Searle\"-- Provided by publisher.
Community-based participatory research and integrated knowledge translation: advancing the co-creation of knowledge
by
Jull, Janet
,
Giles, Audrey
,
Graham, Ian D.
in
Co-creation
,
Collaboration
,
Community Participation
2017
Background
Better use of research evidence (one form of “knowledge”) in health systems requires partnerships between researchers and those who contend with the real-world needs and constraints of health systems. Community-based participatory research (CBPR) and integrated knowledge translation (IKT) are research approaches that emphasize the importance of creating partnerships between researchers and the people for whom the research is ultimately meant to be of use (“knowledge users”). There exist poor understandings of the ways in which these approaches converge and diverge. Better understanding of the similarities and differences between CBPR and IKT will enable researchers to use these approaches appropriately and to leverage best practices and knowledge from each. The co-creation of knowledge conveys promise of significant social impacts, and further understandings of how to engage and involve knowledge users in research are needed.
Main text
We examine the histories and traditions of CBPR and IKT, as well as their points of convergence and divergence. We critically evaluate the ways in which both have the potential to contribute to the development and integration of knowledge in health systems. As distinct research traditions, the underlying drivers and rationale for CBPR and IKT have similarities and differences across the areas of motivation, social location, and ethics; nevertheless, the practices of CBPR and IKT converge upon a common aim: the co-creation of knowledge that is the result of knowledge user and researcher expertise. We argue that while CBPR and IKT both have the potential to contribute evidence to implementation science and practices for collaborative research, clarity for the purpose of the research—social change or application—is a critical feature in the selection of an appropriate collaborative approach to build knowledge.
Conclusion
CBPR and IKT bring distinct strengths to a common aim: to foster democratic processes in the co-creation of knowledge. As research approaches, they create opportunities to challenge assumptions about for whom, how, and what is defined as knowledge, and to develop and integrate research findings into health systems. When used appropriately, CBPR and IKT both have the potential to contribute to and advance implementation science about the conduct of collaborative health systems research.
Journal Article
An Intellectual History of School Leadership Practice and Research
An Intellectual History of School Leadership Practice and Research presents a detailed and critical account of the ideas that underpin the practice of educational leadership, through drawing on over 20 years of research into those who generate, popularise and use those ideas. It moves from abstracted accounts of knowledge claims based on studying field outputs, towards the biographies and practices of those actively involved in the production and use of field knowledge. The book presents a critical account of the ideas underpinning educational leadership, and engages with those ideas by examining the origins, development and use of conceptual frameworks and models of best practice. It deploys an original approach to the design and composition of an intellectual history, and as such it speaks to a wider audience of scholars who are interested in developing and deploying such approaches in their particular fields.
Identifying Research Trends and Gaps in the Context of COVID-19
by
Shaw, Rajib
,
Zhang, Hongyue
in
Biomedical Research - organization & administration
,
Biomedical Research - trends
,
Coronavirus Infections - epidemiology
2020
The COVID-19 pandemic has affected the world in different ways. Not only are people’s lives and livelihoods affected, but the virus has also affected people’s lifestyles. In the research sector, there have been significant changes, and new research is coming very strongly in the related fields of virology and epidemiology. Similar trends were observed after the Severe Acute Respiratory Syndrome Coronavirus (SARS-CoV) and Middle East Respiratory Syndrome Coronavirus (MERS-CoV) episodes of 2003 and 2012, respectively. Analyzing 20 years of published scientific papers, this article points out the highlights of coronavirus-related research. Significant progress is observed in the past research related to virology, epidemiology, infectious diseases among others. However, in research linked to public health, its governance, technology, and risk communication there seem to be gap areas. Although the World Health Organization (WHO) global research road map has identified social science-related research as a priority area, more focus needs to be given in the upcoming days for multi, cross and trans-disciplinary research related to public health and disaster risk reduction.
Journal Article
Gender differences in grant and personnel award funding rates at the Canadian Institutes of Health Research based on research content area: A retrospective analysis
2019
Although women at all career stages are more likely to leave academia than men, early-career women are a particularly high-risk group. Research supports that women are less likely than men to receive research funding; however, whether funding success rates vary based on research content is unknown. We addressed gender differences in funding success rates for applications directed to one or more of 13 institutes, representing research communities, over a 15-year period.
We retrospectively reviewed 55,700 grant and 4,087 personnel award applications submitted to the Canadian Institutes of Health Research. We analyzed application success rates according to gender and the primary institute selected by applicants, pooled gender differences in success rates using random effects models, and fitted Poisson regression models to assess the effects of gender, time, and institute. We noted variable success rates among grant applications directed to selected institutes and declining success rates over time. Women submitted 31.1% and 44.7% of grant and personnel award applications, respectively. In the pooled estimate, women had significantly lower grant success (risk ratio [RR] 0.89, 95% confidence interval [CI] 0.84-0.94; p < 0.001; absolute difference 3.2%) compared with men, with substantial heterogeneity (I2 = 58%). Compared with men, women who directed grants to the Institutes of Cancer Research (RR 0.86, 95% CI 0.78-0.96), Circulatory and Respiratory Health (RR 0.74, 95% CI 0.66-0.84), Health Services and Policy Research (RR 0.78, 95% CI 0.68-0.90), and Musculoskeletal Health and Arthritis (RR 0.80, 95% CI 0.69-0.93) were significantly less likely to be funded, and those who directed grants to the Institute of Aboriginal People's Health (RR 1.67, 95% CI 1.0-2.7) were more likely to be funded. Overall, women also had significantly lower personnel award success (RR 0.75, 95% CI 0.65-0.86; p < 0.001; absolute difference 6.6%). Regression modelling identified that the effect of gender on grant success rates differed by institute and not time. Study limitations include use of institutes as a surrogate identifier, variability in designation of primary institute, and lack of access to metrics reflecting applicants, coapplicants, peer reviewers, and the peer-review process.
Gender disparity existed overall in grant and personnel award success rates, especially for grants directed to selected research communities. Funding agencies should monitor for gender differences in grant success rates overall and by research content.
Journal Article
Conceptualising the initiation of researcher and research user partnerships: a meta-narrative review
by
Zych, Maria Maddalena
,
Gagliardi, Anna R.
,
Berta, Whitney B.
in
Academic disciplines
,
Action research
,
Analysis
2020
Background
Integrated knowledge translation refers to researcher and research user partnerships to co-generate and implement knowledge. This type of partnership may be critical to success in increasing knowledge use and impact, but the conceptualisation of its initiation has not been fully developed. Initiating this type of partnership has proven to be challenging but crucial to its success. The purpose of this study was to conduct a meta-narrative review of partnership initiation concepts, processes, enablers, barriers and outcomes in the disciplines of healthcare and social sciences where examples of researcher and research user partnerships were found.
Methods
Seven research traditions were identified. Three were in the discipline of social sciences (including psychology, education and business) and five were in the discipline of healthcare (including medicine, nursing, public health, health services research). Searches were conducted in MEDLINE, EMBASE, CINAHL, ABI Inform, ERIC, PsychInfo and the Cochrane Library on June 9, 2017. Fifty titles and abstracts were screened in triplicate; data were extracted from three records in duplicate. Narratives comprised of study characteristics and conceptual and empirical findings across traditions were tabulated, summarised and compared.
Results
A total of 7779 unique results were identified and 17 reviews published from 1998 to 2017 were eligible. All reviews identified a partnership initiation phase referred to as ‘early’ or ‘developmental’, or more vaguely as ‘fuzzy’, across six traditions – integrated knowledge translation, action research, stakeholder engagement, knowledge transfer, team initiation and shared mental models. The partnership initiation processes, enablers, barriers and outcomes were common to multiple narratives and summarised in a Partnership Initiation Conceptual Framework. Our review revealed limited use or generation of theory in most included reviews, and little empirical evidence testing the links between partnership initiation processes, enablers or barriers, and outcomes for the purpose of describing successful researcher and research user partnership initiation.
Conclusions
Narratives across multiple research traditions revealed similar integrated knowledge translation initiation processes, enablers, barriers and outcomes, which were captured in a conceptual framework that can be employed by researchers and research users to study and launch partnerships. While partnership initiation was recognised, it remains vaguely conceptualised despite lengthy research in several fields of study. Ongoing research of partnership initiation is needed to identify or generate relevant theory, and to empirically establish outcomes and the determinants of those outcomes.
Journal Article