Addressing the Need for Just GeoHealth Engagement: Evolving Models for Actionable Research That Transform Communities.
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SUBMITTER: Hayhow CM
PROVIDER: S-EPMC8670557 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:The engagement of patients and the public is increasingly important in the design and conduct of research. Some researchers still cling to the outdated notion that laypeople cannot contribute meaningfully to science; for some, "community engagement" is another term for recruiting patients for trials. Authentic engagement encompasses far more, involving stakeholders as full partners in all phases of research, as research funders increasingly require. Such engagement, although challenging, can enhance the quality and impact of studies on many levels, from ensuring that data are relevant to users' needs to elevating the moral plane of research by showing respect to patients and vulnerable populations. We share examples from our work, including the engagement of patients in a study of cancer screening decisions and the engagement of inner-city residents in addressing social determinants of health. These engagement principles are of growing relevance to health systems and policy makers responsible for population health.
| S-EPMC4868544 | biostudies-literature
Project description:Osteoporosis, the progressive loss of bone mass resulting in fragility fractures, affects ∼75 million people in the United States, Europe and Japan. Bone mineral density (BMD) correlates with fracture risk and is widely used in clinical settings to predict fracture. Numerous studies have demonstrated that peak bone mass is highly heritable and consequently a number of genome-wide association studies (GWASs) have been conducted to identify the genes that regulate BMD. Traditional intercross mapping in the mouse has met with limited successes in the field of skeletal biology. With the advent of human GWAS, questions have arisen about the continued need for mouse models in genetics research. However, significant advances have been made in the field of mouse genetics, including new genetics resource populations and loci mapping techniques, which enable gene-level mapping resolution. In this review, we discuss the need for mouse models to help understand the skeletal biology underlying novel human GWAS findings, how loci discovered in the mouse can be used to complement GWAS analysis and highlight the recent advances made in the field of skeletal biology from the use of these new and developing resources. We conclude this paper with a discussion of the need for systems-level approaches in the skeletal biology field, with an emphasis on the need for pathway and network analyses.
| S-EPMC3727715 | biostudies-other
Project description:IntroductionGlobal migration and immigration are increasing, and migrants and immigrants (im/migrants) have specific health needs and healthcare experiences. Yet, im/migrant involvement in immigration and health research in Canada is inconsistent. Heretofore, involvement has primarily been in research planning, data collection and analysis, with little community involvement during knowledge exchange or through training and colearning opportunities. Community engagement has been especially uncommon in mixed-method and quantitative research in Canada.ObjectiveThis article describes lessons learnt from the Evaluating Inequities in Refugee & Immigrants' Health Access (IRIS) project from 2018 to 2023, an ongoing mixed-method, community-based research project in British Columbia, Canada. Specifically, we share our core community engagement project structures, Commitments to Community and our Community Engagement Backbone, both collaboratively developed with im/migrant community memebers.ParticipantsPeople with varied experiences of im/migration and connections to multiple, specific im/migrant communities participate in the project as participants, community researchers, community advisory board members, faculty members and students. Core research activities are supported in English, Farsi, Spanish and Tigrinya. We engage community members throughout the research process, from identifying research topics to knowledge exchange.ConclusionWe found that these structures offer an accessible visual representation of the project's commitments to community engagement, and the ways these commitments are demonstrated through values and action. Our training opportunities, colearning activities and knowledge exchange efforts also confirmed the accuracy of interpretation, prompted additional analysis to clarify or add depth to findings, and helped us identify additional research topics. We hope these learnings can be used to expand engagement with diverse im/migrant communities in health and immigration research.
| S-EPMC10729093 | biostudies-literature
Project description:IntroductionDespite the widely recognized ethical and practical benefits of community engagement in HIV research, epistemic injustice persists within the field. Namely, the knowledge held by communities disproportionately affected by HIV is systematically afforded less credibility than that of more privileged academic researchers. In order to illustrate what this looks like in practice, we synthesized the extent of reporting on community engagement within recent high-impact HIV intervention research papers. However, we also posit that the HIV research sector has the potential to devise and showcase world-leading examples of equitable research-community partnerships and suggest actionable key steps to achieving this goal.DiscussionIn the absence of reporting requirements within the publishing process, it is difficult to infer whether and how the community have been consulted in the design, implementation, analysis and/or interpretation of findings. As an illustrative exercise, we offer a rapid synthesis of the extent of reporting on community engagement in HIV research from 2017 to 2019, which highlighted sporadic and very low rates of reporting of community engagement in recent high-impact HIV intervention studies. Of note is that none of the included studies reported on community engagement through all stages of the research process. There were also discrepancies in how community involvement was reported. We provide three actionable recommendations to enhance reporting on community engagement in HIV research: (1) community-led organizations, researchers and scientific journals should band together to develop, publish and require adherence to standardized guidelines for reporting on community involvement in HIV research; (2) research funders should (continue to) require details about how relevant communities have been engaged prior to the submission of funding requests; and (3) researchers should take proactive measures to describe their engagement with community organizations in a clear and transparent manner.ConclusionsThere is a clear and urgent need for guidelines that facilitate transparent and consistent reporting on community engagement in HIV intervention research. Without standardized reporting requirements and accountability mechanisms within the research sector, the extent of meaningful community engagement cannot be established and may remain a catchphrase rather than reality.
| S-EPMC8771147 | biostudies-literature
Project description:Natural language processing models have emerged that can generate useable software and automate a number of programming tasks with high fidelity. These tools have yet to have an impact on the chemistry community. Yet, our initial testing demonstrates that this form of artificial intelligence is poised to transform chemistry and chemical engineering research. Here, we review developments that brought us to this point, examine applications in chemistry, and give our perspective on how this may fundamentally alter research and teaching.
| S-EPMC8996826 | biostudies-literature
Project description:Community-developed minimum information checklists are designed to drive the rich and consistent reporting of metadata, underpinning the reproducibility and reuse of the data. These reporting guidelines, however, are usually in the form of narratives intended for human consumption. Modular and reusable machine-readable versions are also needed. Firstly, to provide the necessary quantitative and verifiable measures of the degree to which the metadata descriptors meet these community requirements, a requirement of the FAIR Principles. Secondly, to encourage the creation of standards-driven templates for metadata authoring, especially when describing complex experiments that require multiple reporting guidelines to be used in combination or extended. We present new functionalities to support the creation and improvements of machine-readable models. We apply the approach to an exemplar set of reporting guidelines in Life Science and discuss the challenges. Our work, targeted to developers of standards and those familiar with standards, promotes the concept of compositional metadata elements and encourages the creation of community-standards which are modular and interoperable from the onset.
| S-EPMC9525592 | biostudies-literature
Project description:BackgroundDissemination of research findings to past study participants and the community-at-large is important. Yet, a standardized process for research dissemination is needed to report results to the community.ObjectiveWe developed a framework and strategies to guide community-academic partnerships in community-targeted, dissemination efforts.MethodsFrom 2017 to 2019, a community-academic partnership was formed in Nashville, Tennessee, and iteratively developed a framework and strategies for research dissemination using cognitive interviews. A deductive, constant comparative analysis was conducted on interview responses to examine framework and strategy content. Feedback was used to finalize the framework and strategies for the evaluation. Using existing data, the framework's utility was evaluated in seven town hall meetings (n = 117). Bivariate analyses determined its effect on community members' trust and willingness to participate in research using pre- and post-surveys. Evaluation results were used to finalize the framework.ResultsThe Community-Engaged Research Dissemination (CERD) framework has two phases. Phase one is a preliminary planning phase with two steps, and phase two is the four-step dissemination process. There are five standards to be upheld conducting these phases. We provide competencies for each component. Three feasible, culturally adapted strategies were developed as exemplars to disseminate research findings. Using pre- and post-surveys for intervention evaluation, there was a significant difference in trust in medical research and researchers (P = .006) and willingness to participate in research (P = .013).Discussion and conclusionThe CERD framework can potentially standardize the process and compare the effect of dissemination efforts on the community's trust and willingness to participate in research.
| S-EPMC7495063 | biostudies-literature
Project description:BackgroundMultinational clinical trials are logistically complex and require close coordination between various stakeholders. They must comply with global clinical standards and are accountable to multiple regulatory and ethical bodies. In resource-limited settings, it is challenging to understand how to apply global clinical standards to international, national, and local factors in clinical trials, making multiple-level stakeholder engagement an important element in the successful conduct of these clinical trials.Main bodyDuring the planning and implementation of a large multinational clinical trial for intermittent preventive treatment of malaria in pregnancy in resource-limited areas of sub-Saharan Africa, we encountered numerous challenges, which required implementation of a range of engagement measures to ensure compliance with global clinical and regulatory standards. These challenges included coordination with ongoing global malaria efforts, heterogeneity in national regulatory structures, sub-optimal healthcare infrastructure, local practices and beliefs, and perspectives that view healthcare providers with undue trust or suspicion. In addition to engagement with international bodies, such as the World Health Organization, the Malaria in Pregnancy Consortium, the Steve Biko Centre for Bioethics, and the London School of Hygiene and Tropical Medicine, in order to address the challenges just described, Pfizer Inc. and Medicines for Malaria Venture (the "Sponsoring Entities" for these studies) and investigators liaised with national- and district-level stakeholders such as health ministers and regional/local community health workers. Community engagement measures undertaken by investigators included local meetings with community leaders to explain the research aims and answer questions and concerns voiced by the community. The investigators also engaged with family members of prospective trial participants in order to be sensitive to local practices and beliefs.ConclusionEngagement with key stakeholders at international and national levels enabled the Sponsoring Entities to address challenges by aligning the study design with the requirements of health and regulatory agencies and to understand and address healthcare infrastructure needs prior to trial initiation. Local stakeholder engagement, including community members, study participants, and family enabled the investigators to address challenges by ensuring that study design and conduct were adapted to local considerations and ensuring accurate information about the study aims was shared with the public.Trial registrationClinicalTrials.gov, ID: NCT01103063 . Registered on 7 April 2010.
| S-EPMC5863846 | biostudies-literature
Project description: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.
| S-EPMC9396146 | biostudies-literature
Project description:INTRODUCTION:The importance of community engagement has been established globally in health and wellness research. A certain degree of ambiguity remains, however, regarding the meaning of community engagement, which term has been used for various purposes and implemented in various forms. In this study, we aimed to explore the different definitions of community engagement, discuss the various objectives that have been proposed and uncover the diverse ways this concept has been implemented among researchers working for the betterment of the health and wellness of immigrant communities in host countries. METHODS AND ANALYSIS:Taxonomy is a process for classifying complex and multifaceted matters using logical conceptual domains and dimensions for clearer way of contextualising. We will develop a taxonomy to organise the available literature on community engagement in immigrant health and wellness research in a way that captures user knowledge and understanding of its various meanings and processes. Specific methodological and analytical frameworks for systematic review and taxonomy development will guide each step. We will conduct a comprehensive systematic search in relevant databases, from inception to December 2019, using appropriate keywords followed by snowball search (single-citation tracking, reference lists). Papers will be included if they fall within predefined inclusion criteria (seen as most likely informative on elements pertaining to community engagement) and are written in English, regardless of design (conceptual, qualitative and quantitative). Two reviewers will independently employ two-stage screening (title-abstract screening followed by screening of the full text to determine inclusion). Finally, information that helps to develop taxonomy of the concept and practice of community engagement will be abstracted and used towards taxonomy development, where different levels of stakeholder research team members will be involved. ETHICS AND DISSEMINATION:Ethical approval is not required for this systematic review. We have opted for an integrated knowledge translation or a community-engaged knowledge mobilisation approach where we are engaged with community-based citizen researchers from the inception of our programme. We plan to disseminate the results of our review through meetings with key stakeholders, followed by journal publications and presentations at applicable platforms.
| S-EPMC7245376 | biostudies-literature