Research and Technology Organizations as Super Intermediaries: A Conceptual Framework for Policy and a Case Study From Tanzania.
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ABSTRACT:
SUBMITTER: Sheikheldin GH
PROVIDER: S-EPMC8245844 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BACKGROUND:Prognostic research has many important purposes, including (i) describing the natural history and clinical course of health conditions, (ii) investigating variables associated with health outcomes of interest, (iii) estimating an individual's probability of developing different outcomes, (iv) investigating the clinical application of prediction models, and (v) investigating determinants of recovery that can inform the development of interventions to improve patient outcomes. But much prognostic research has been poorly conducted and interpreted, indicating that a number of conceptual areas are often misunderstood. Recent initiatives to improve this include the Prognosis Research Strategy (PROGRESS) and the Transparent Reporting of a multivariable prediction model for Individual Prognosis or Diagnosis (TRIPOD) Statement. In this paper, we aim to show how different categories of prognostic research relate to each other, to differentiate exploratory and confirmatory studies, discuss moderators and mediators, and to show how important it is to understand study designs and the differences between prediction and causation. MAIN TEXT:We propose that there are four main objectives of prognostic studies - description, association, prediction and causation. By causation, we mean the effect of prediction and decision rules on outcomes as determined by intervention studies and the investigation of whether a prognostic factor is a determinant of outcome (on the causal pathway). These either fall under the umbrella of exploratory (description, association, and prediction model development) or confirmatory (prediction model external validation and investigation of causation). Including considerations of causation within a prognostic framework provides a more comprehensive roadmap of how different types of studies conceptually relate to each other, and better clarity about appropriate model performance measures and the inferences that can be drawn from different types of prognostic studies. We also propose definitions of 'candidate prognostic factors', 'prognostic factors', 'prognostic determinants (causal)' and 'prognostic markers (non-causal)'. Furthermore, we address common conceptual misunderstandings related to study design, analysis, and interpretation of multivariable models from the perspectives of association, prediction and causation. CONCLUSION:This paper uses a framework to clarify some concepts in prognostic research that remain poorly understood and implemented, to stimulate discussion about how prognostic studies can be strengthened and appropriately interpreted.
| S-EPMC7325141 | biostudies-literature
Project description:Communities of Practice (CoPs) are groups of people that interact regularly to deepen their knowledge on a specific topic. Thanks to information and communication technologies, CoPs can involve experts distributed across countries and adopt a 'transnational' membership. This has allowed the strategy to be applied to domains of knowledge such as health policy with a global perspective. CoPs represent a potentially valuable tool for producing and sharing explicit knowledge, as well as tacit knowledge and implementation practices. They may also be effective in creating links among the different 'knowledge holders' contributing to health policy (e.g., researchers, policymakers, technical assistants, practitioners, etc.). CoPs in global health are growing in number and activities. As a result, there is an increasing need to document their progress and evaluate their effectiveness. This paper represents a first step towards such empirical research as it aims to provide a conceptual framework for the analysis and assessment of transnational CoPs in health policy.The framework is developed based on the findings of a literature review as well as on our experience, and reflects the specific features and challenges of transnational CoPs in health policy. It organizes the key elements of CoPs into a logical flow that links available resources and the capacity to mobilize them, with knowledge management activities and the expansion of knowledge, with changes in policy and practice and, ultimately, with an improvement in health outcomes. Additionally, the paper addresses the challenges in the operationalization and empirical application of the framework.
| S-EPMC3819672 | biostudies-literature
Project description:BackgroundPrevious efforts to produce case descriptions have typically not focused on the organizations that produce research evidence and support its use. External evaluations of such organizations have typically not been analyzed as a group to identify the lessons that have emerged across multiple evaluations. Case descriptions offer the potential for capturing the views and experiences of many individuals who are familiar with an organization, including staff, advocates, and critics.MethodsWe purposively sampled a subgroup of organizations from among those that participated in the second (interview) phase of the study and (once) from among other organizations with which we were familiar. We developed and pilot-tested a case description data collection protocol, and conducted site visits that included both interviews and documentary analyses. Themes were identified from among responses to semi-structured questions using a constant comparative method of analysis. We produced both a brief (one to two pages) written description and a video documentary for each case.ResultsWe conducted 51 interviews as part of the eight site visits. Two organizational strengths were repeatedly cited by individuals participating in the site visits: use of an evidence-based approach (which was identified as being very time-consuming) and existence of a strong relationship between researchers and policymakers (which can be challenged by conflicts of interest). Two organizational weaknesses - a lack of resources and the presence of conflicts of interest - were repeatedly cited by individuals participating in the site visits. Participants offered two main suggestions for the World Health Organization (and other international organizations and networks): 1) mobilize one or more of government support, financial resources, and the participation of both policymakers and researchers; and 2) create knowledge-related global public goods.ConclusionThe findings from our case descriptions, the first of their kind, intersect in interesting ways with the messages arising from two systematic reviews of the factors that increase the prospects for research use in policymaking. Strong relationships between researchers and policymakers bodes well given such interactions appear to increase the prospects for research use. The time-consuming nature of an evidence-based approach, on the other hand, suggests the need for more efficient production processes that are 'quick and clean enough.' Our case descriptions and accompanying video documentaries provide a rich description of organizations supporting the use of research evidence, which can be drawn upon by those establishing or leading similar organizations, particularly in low- and middle-income countries.
| S-EPMC2639616 | biostudies-literature
Project description:Conceptual frameworks are useful in research because they can highlight priority research domains, inform decisions about interventions, identify outcomes and factors to measure, and display how factors might relate to each other to generate and test hypotheses. Discovery, translational, and implementation research are all critical to the overall mission of genomic medicine and prevention, but they have yet to be organized into a unified conceptual framework. To fill this gap, our diverse team collaborated to develop the Genomic Medicine Integrative Research (GMIR) Framework, a simple but comprehensive tool to aid the genomics community in developing research questions, strategies, and measures and in integrating genomic medicine and prevention into clinical practice. Here we present the GMIR Framework and its development, along with examples of its use for research development, demonstrating how we applied it to select and harmonize measures for use across diverse genomic medicine implementation projects. Researchers can utilize the GMIR Framework for their own research, collaborative investigations, and clinical implementation efforts; clinicians can use it to establish and evaluate programs; and all stakeholders can use it to help allocate resources and make sure that the full complexity of etiology is included in research and program design, development, and evaluation.
| S-EPMC6556906 | biostudies-literature
Project description:Objective:Critical appraisal of clinical evidence promises to help prevent, detect, and address flaws related to study importance, ethics, validity, applicability, and reporting. These research issues are of growing concern. The purpose of this scoping review is to survey the current literature on evidence appraisal to develop a conceptual framework and an informatics research agenda. Methods:We conducted an iterative literature search of Medline for discussion or research on the critical appraisal of clinical evidence. After title and abstract review, 121 articles were included in the analysis. We performed qualitative thematic analysis to describe the evidence appraisal architecture and its issues and opportunities. From this analysis, we derived a conceptual framework and an informatics research agenda. Results:We identified 68 themes in 10 categories. This analysis revealed that the practice of evidence appraisal is quite common but is rarely subjected to documentation, organization, validation, integration, or uptake. This is related to underdeveloped tools, scant incentives, and insufficient acquisition of appraisal data and transformation of the data into usable knowledge. Discussion:The gaps in acquiring appraisal data, transforming the data into actionable information and knowledge, and ensuring its dissemination and adoption can be addressed with proven informatics approaches. Conclusions:Evidence appraisal faces several challenges, but implementing an informatics research agenda would likely help realize the potential of evidence appraisal for improving the rigor and value of clinical evidence.
| S-EPMC6259661 | biostudies-literature
Project description:BackgroundThe COVID-19 pandemic caused widespread societal disruption, with governmental stay-at-home orders resulting in people connecting more via technology rather than in person. This shift had major impacts on older adult residents staying in retirement homes and residential care facilities, where they may lack the technology literacy needed to stay connected. The enTECH Computer Club from the University of Waterloo in Ontario, Canada created a knowledge translation toolkit to support organizations interested in starting technology literacy programs (TLPs) by providing guidance and practical tips.ObjectiveThis paper aimed to present a framework for implementing TLPs in retirement homes and residential care facilities through expanding on the knowledge translation toolkit and the framework for person-centered care.MethodsMajor concepts relating to the creation of a TLP in retirement homes and residential care facilities were extracted from the enTECH knowledge translation toolkit. The domains from the framework for person-centered care were modified to fit a TLP context. The concepts identified from the toolkit were sorted into the three framework categories: "structure," "process," and "outcome." Information from the knowledge translation toolkit were extracted into the three categories and synthesized to form foundational principles and potential actions.ResultsAll 13 domains from the framework for person-centered care were redefined to shift the focus on TLP implementation, with 7 domains under "structure," 4 domains under "process," and 2 domains under "outcome." Domains in the "structure" category focus on developing an organizational infrastructure to deliver a successful TLP; 10 foundational principles and 25 potential actions were identified for this category. Domains in the "process" category focus on outlining procedures taken by stakeholders involved to ensure a smooth transition from conceptualization into action; 12 foundational principles and 9 potential actions were identified for this category. Domains in the "outcome" category focus on evaluating the TLP to consider making any improvements to better serve the needs of older adults and staff; 6 foundational principles and 6 potential actions were identified for this category.ConclusionsSeveral domains and their foundational principles and potential actions from the TLP framework were found to be consistent with existing literatures that encourage taking active steps to increase technology literacy in older adults. Although there may be some limitations to the components of the framework with the current state of the pandemic, starting TLPs in the community can yield positive outcomes that will be beneficial to both older adult participants and the organization in the long term.
| S-EPMC9440411 | biostudies-literature
Project description:Patient engagement in research (PEIR) is promoted to improve the relevance and quality of health research, but has little conceptualization derived from empirical data.To address this issue, we sought to develop an empirically based conceptual framework for meaningful PEIR founded on a patient perspective.We conducted a qualitative secondary analysis of in-depth interviews with 18 patient research partners from a research centre-affiliated patient advisory board. Data analysis involved three phases: identifying the themes, developing a framework and confirming the framework. We coded and organized the data, and abstracted, illustrated, described and explored the emergent themes using thematic analysis. Directed content analysis was conducted to derive concepts from 18 publications related to PEIR to supplement, confirm or refute, and extend the emergent conceptual framework. The framework was reviewed by four patient research partners on our research team.Participants' experiences of working with researchers were generally positive. Eight themes emerged: procedural requirements, convenience, contributions, support, team interaction, research environment, feel valued and benefits. These themes were interconnected and formed a conceptual framework to explain the phenomenon of meaningful PEIR from a patient perspective. This framework, the PEIR Framework, was endorsed by the patient research partners on our team.The PEIR Framework provides guidance on aspects of PEIR to address for meaningful PEIR. It could be particularly useful when patient-researcher partnerships are led by researchers with little experience of engaging patients in research.
| S-EPMC5750689 | biostudies-other
Project description:This article presents a comprehensive conceptual framework designed to foster research in the changing needs of caregivers and persons with dementia as they move through their illness trajectory. It builds on prior theoretical models and intervention literature in the field, while at the same time addressing notable gaps including inadequate attention to cultural issues; lack of longitudinal research; focus on primary caregivers, almost to the exclusion of the person with dementia and other family members; limited outcome measures; and lack of attention to how the culture of health care systems affects caregivers' quality of life. The framework emphasizes the intersectionality of caregiving, sociocultural factors, health care systems' factors, and dementia care needs as they change across time. It provides a template to encourage longitudinal research on reciprocal relationships between caregiver and care recipient because significant changes in the physical and/or mental health status of one member of the dyad will probably affect the physical and/or mental health of the partner. This article offers illustrative research projects employing this framework and concludes with a call to action and invitation to researchers to test components, share feedback, and participate in continued refinement to more quickly advance evidence-based knowledge and practice in the trajectory of dementia caregiving.
| S-EPMC7019661 | biostudies-literature
Project description:The increasing emphasis on translational approaches to complex neuropsychiatric and neurodevelopmental conditions research requires scientists from a broad range of disciplines to build dynamic collaborations when formulating hypotheses and framing study designs. The need to integrate the knowledge and perspectives not only from multiple scientific silos but also from the populations impacted by these conditions presents a significant challenge to researchers, particularly for a heterogeneous condition like autism. As one path toward addressing these challenges, we have previously introduced Autism Genetics Outcomes (AutGO), an initiative to support broad stakeholder partnerships and promote a new integrated concept called GO (i.e., research approaches that draw on both genetics and clinical outcomes perspectives). Herein, we developed a workflow for collecting stakeholders' feedback toward the development of a GO hypothesis. AutGO is an evolving initiative, and here we describe how its three essential components (conceptual framework, applicability, and implementation) have been developed. As a proof-of-concept, the AutGO team sought to demonstrate how a GO hypothesis could be developed using a semi-structured literature review workflow. We also developed a prototype from published reports and formulated a GO hypothesis for autism. Rather than seeking community stakeholder input after a research project is conceptualized and designed, the developed conceptual framework demonstrates the feasibility of formulating scientific hypotheses by engaging stakeholders in retrospective semi-structured literature reviews. The presented workflow, prototype, and discussed recommendations will bring awareness in the autism research community about the benefits of applying the GO approach in order to promote translational aspects in genetics research. LAY SUMMARY: We used a community-based engagement approach to develop AutGO (Autism Genetics Outcomes), an initiative to establish stakeholder partnerships and to promote research approaches (we refer to as GO) that draw on both genetics and clinical outcomes perspectives. Specifically, we developed a conceptual framework that includes a literature review process for developing GO hypotheses and stakeholder feedback collection protocol. Our work will bring awareness in the autism research community about the benefits of integrating patient perspectives in genetics research. Autism Res 2020, 13: 1286-1299. © 2020 The Authors. Autism Research published by International Society for Autism Research published by Wiley Periodicals LLC.
| S-EPMC7496490 | biostudies-literature
Project description:BackgroundPrevious surveys of organizations that support the development of evidence-informed health policies have focused on organizations that produce clinical practice guidelines (CPGs) or undertake health technology assessments (HTAs). Only rarely have surveys focused at least in part on units that directly support the use of research evidence in developing health policy on an international, national, and state or provincial level (i.e., government support units, or GSUs) that are in some way successful or innovative or that support the use of research evidence in low- and middle-income countries (LMICs).MethodsWe drew on many people and organizations around the world, including our project reference group, to generate a list of organizations to survey. We modified a questionnaire that had been developed originally by the Appraisal of Guidelines, Research and Evaluation in Europe (AGREE) collaboration and adapted one version of the questionnaire for organizations producing CPGs and HTAs, and another for GSUs. We sent the questionnaire by email to 176 organizations and followed up periodically with non-responders by email and telephone.ResultsWe received completed questionnaires from 152 (86%) organizations. More than one-half of the organizations (and particularly HTA agencies) reported that examples from other countries were helpful in establishing their organization. A higher proportion of GSUs than CPG- or HTA-producing organizations involved target users in the selection of topics or the services undertaken. Most organizations have few (five or fewer) full-time equivalent (FTE) staff. More than four-fifths of organizations reported providing panels with or using systematic reviews. GSUs tended to use a wide variety of explicit valuation processes for the research evidence, but none with the frequency that organizations producing CPGs, HTAs, or both prioritized evidence by its quality. Between one-half and two-thirds of organizations do not collect data systematically about uptake, and roughly the same proportions do not systematically evaluate their usefulness or impact in other ways.ConclusionThe findings from our survey, the most broadly based of its kind, both extend or clarify the applicability of the messages arising from previous surveys and related documentary analyses, such as how the 'principles of evidence-based medicine dominate current guideline programs' and the importance of collaborating with other organizations. The survey also provides a description of the history, structure, processes, outputs, and perceived strengths and weaknesses of existing organizations from which those establishing or leading similar organizations can draw.
| S-EPMC2646748 | biostudies-literature