A conceptual framework to accelerate the clinical impact of evolving research into long COVID.
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ABSTRACT:
SUBMITTER: Kondratiuk AL
PROVIDER: S-EPMC8062085 | 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: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: Not available
| S-EPMC7270833 | 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: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:BACKGROUND:Health systems in Australia and worldwide are increasingly expected to conduct research and quality improvement activities in addition to delivering clinical care and training health professionals. This study aims to inform a research impact evaluation at a regional Australian Hospital and Health Service by developing a programme theory showing how research investment is expected to have impact. METHODS:This qualitative study, representing the first phase of a larger mixed methods research impact evaluation at the Townsville Hospital and Health Service (THHS), adopts a realist-informed design involving the development of a programme theory. Data were obtained between February and May 2019 from strategic documentation and interviews with six current and former health service executives and senior employees. Inductive themes were integrated into a conceptual framework to visually represent the programme theory. RESULTS:Research at THHS has developed organically as the service has matured into a regional tertiary referral service serving a diverse rural and remote population across northern Queensland. Throughout this journey, individual THHS leaders often adopted a research development mantle despite disincentives arising from a performance-driven reporting and activity-based funding service context. Impact expectations from research investment at THHS were identified in the categories of enhanced research activity and capacity among clinicians, and improved clinical practice, health workforce capability and stability, and patient and population health. Seven contextual factors were identified as potential enablers or obstacles to these impact expectations and ambitions. CONCLUSIONS:By identifying both relevant impact types and key contextual factors, this study offers programme theory to inform a planned research impact evaluation at THHS. The conceptual framework may be useful in other regionally based health service settings. More broadly, there are opportunities for future research to test and refine hybrid versions of linear and realist research impact evaluation models that combine resource-intensive, theory-driven approaches with policy practicality.
| S-EPMC7059332 | biostudies-literature
Project description:BackgroundOlder adults are underrepresented in research. Heterogeneity of research processes in this population, specifically in long-term care (LTC) and geriatric acute care (GAC), is not well described and may impede the design, planning, and conduct of research. In this study, we identified, quantified, and mapped stakeholders, research stages, and transversal themes of research processes, to develop a mapping framework to improve research capacity by better characterizing this heterogeneity.MethodsMulticomponent mixed methods study. An environmental scan was used to initiate a preliminary framework. We conducted a systematic literature search on processes, barriers, and methods for clinical research in GAC and LTC to extract and update stakeholders, research stages, and themes. Importance and interactions of elements were synthesized via heatmaps by number of articles, mentions, and content intersections.ResultsFor our initial framework and environmental scan, we surveyed 24 stakeholders. Of 9277 records, 68 articles were included in our systematic review and allowed us to identify 12 stakeholders, 13 research stages, 17 transversal themes (either barriers, facilitators, general themes, or recommendations), and 1868 intersections. Differences in relative importance between LTC and GAC emerged for stakeholders (staff, managers vs. caregivers, ethics committees), and for research stages (funding, facility recruitment vs. ethics, individual recruitment). Crucial themes according to specific stakeholders were collaboration for the research team; communication, trust, and human resources for managers; heterogeneity for patients and residents. A heatmap framework synthesizing vital stakeholders and themes per research stage was generated.ConclusionsWe identified and quantified the interactions between stakeholders, stages, and themes to characterize heterogeneity in LTC and GAC research. Our framework may serve as a blueprint to co-construct and improve each stage of the research process.
| S-EPMC10552295 | biostudies-literature
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:Over the past 30 years, adolescents and young adults (AYA, 15-39 years of age) with cancer have shown significantly less improvement in survival than younger and older patients. Because evidence suggests this may be related to their low participation in cancer clinical trials, increasing accrual to these trials has become a priority for closing this "AYA gap." This paper reviews data documenting low AYA enrollment, presents a conceptual framework for research and intervention (Clinical Trials Pathway to Enrollment) and summarizes recent developments in the United States National Cancer Institute-sponsored clinical trials enterprise that are expected to improve AYA enrollment, including the National Clinical Trials Network (NCTN) and expanded scientific collaboration between the Children's Oncology Group and adult NCTN groups. While time will be required for the effects of these changes to be fully realized, they offer a mechanism for facilitating the breadth of clinical/translational research needed for advancing AYA oncology and measuring its impact.
| S-EPMC6319956 | biostudies-literature