Defining the Scope of Exposome Studies and Research Needs from a Multidisciplinary Perspective
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ABSTRACT:
SUBMITTER: Zhang P
PROVIDER: S-EPMC8515788 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:The Patient, Intervention, Control/Comparison, and Outcome (PICO) framework is an effective technique for framing a clinical question. We aim to develop the counterpart of PICO to structure clinical research data needs.We use a data-driven approach to abstracting key concepts representing clinical research data needs by adapting and extending an expert-derived framework originally developed for defining cancer research data needs. We annotated clinical trial eligibility criteria, EHR data request logs, and data queries to electronic health records (EHR), to extract and harmonize concept classes representing clinical research data needs. We evaluated the class coverage, class preservation from the original framework, schema generalizability, schema understandability, and schema structural correctness through a semi-structured interview with eight multidisciplinary domain experts. We iteratively refined the schema based on the evaluations.Our data-driven schema preserved 68% of the 63 classes from the original framework and covered 88% (73/82) of the classes proposed by evaluators. Class coverage for participants of different backgrounds ranged from 60% to 100% with a median value of 95% agreement among the individual evaluators. The schema was found understandable and structurally sound.Our proposed schema may serve as the counterpart to PICO for improving the research data needs communication between researchers and informaticians.
| S-EPMC4873775 | biostudies-literature
Project description:Purpose of programIntegrated knowledge translation (IKT) is a collaborative approach whereby knowledge created through health research is utilized in ways that are relevant to the needs of all stakeholders. However, research teams have limited capacity and know-how for achieving IKT, resulting in a disconnect between the generation and application of knowledge. The goal of this report is to describe how IKT research was achieved across a large-scale, patient-oriented research network, Canadians Seeking Solutions and Innovations to Overcome Chronic Kidney Disease (Can-SOLVE CKD).Sources of informationResources to facilitate knowledge translation (KT) planning across the network were developed by the Can-SOLVE CKD Knowledge User/Knowledge Translation Committee with reference to established Canadian KT and patient engagement tools and frameworks, review of the published and gray literature, and expertise of committee members.MethodsThe Can-SOLVE CKD Knowledge User/Knowledge Translation Committee consisting of patient partners, health care providers, policymakers, and researchers provided oversight of the development and implementation of the network's IKT initiatives. Guided by its strategic framework, the committee developed KT planning templates and review checklists to assist network projects with preparing for dissemination, implementation, and scale and spread of their interventions. The committee has acted in a consultative capacity to facilitate IKT across network initiatives and has supported capacity building through KT activities aimed at network membership and knowledge users more broadly.Key findingsThe Can-SOLVE CKD Knowledge User/Knowledge Translation Committee established a nation-wide strategy for KT infrastructure and capacity building. Acting as a knowledge intermediary, the committee has connected research teams with knowledge users across Canada to support practices and policies informed by evidence generated by the network. The committee has developed KT initiatives, including a Community of Practice, whereby participants across different regions and disciplines convene regularly to share health research knowledge and communications strategies relevant to the network. Critically, patients are engaged and contribute throughout the research process. Examples of IKT activities from select projects are provided, as well as ways for sustaining the network's KT platform.LimitationsThe KT resources developed by the committee were adapted from other established resources to meet the needs of the network and have not undergone formal evaluation in this context. Given the broad scope of the network, resources to facilitate implementation and knowledge user engagement may not meet the needs of all initiatives and must be tailored accordingly. Knowledge barriers, including a lack of information and skills related to conceptual and practical aspects of KT, among network members provided a rationale for various KT capacity-building initiatives.ImplicationsThe approach described here offers a practical method for achieving IKT, including how to plan, implement, and sustain initiatives across large-scale health research networks. Within the context of Can-SOLVE CKD, these efforts will shorten knowledge-practice gaps through producing and applying relevant research to improve the lives of people living with kidney disease.
| S-EPMC8040615 | biostudies-literature
Project description:HIV infection, and potentially its treatment, increases the risk of an arterial ischemic stroke. Multiple etiologies and lack of clear case definitions inhibit progress in this field. Several etiologies, many treatable, are relevant to HIV-related stroke. To fully understand the mechanisms and the terminology used, a robust classification algorithm to help ascribe the various etiologies is needed. This consensus paper considers the strengths and limitations of current case definitions in the context of HIV infection. The case definitions for the major etiologies in HIV-related strokes were refined (e.g., varicella zoster vasculopathy and antiphospholipid syndrome) and in some instances new case definitions were described (e.g., HIV-associated vasculopathy). These case definitions provided a framework for an algorithm to help assign a final diagnosis, and help classify the subtypes of HIV etiology in ischemic stroke.
| S-EPMC4929887 | biostudies-other
Project description:The emergence of ecosystem-based fisheries management (EBFM) has broadened the policy scope of fisheries management by accounting for the biological and ecological connectivity of fisheries. Less attention, however, has been given to the economic connectivity of fisheries. If fishers consider multiple fisheries when deciding where, when, and how much to fish, then management changes in one fishery can generate spillover impacts in other fisheries. Catch-share programs are a popular fisheries management framework that may be particularly prone to generating spillovers given that they typically change fishers' incentives and their subsequent actions. We use data from Alaska fisheries to examine spillovers from each of the main catch-share programs in Alaska. We evaluate changes in participation-a traditional indicator in fisheries economics-in both the catch-share and non-catch-share fisheries. Using network analysis, we also investigate whether catch-share programs change the economic connectivity of fisheries, which can have implications for the socioeconomic resilience and robustness of the ecosystem, and empirically identify the set of fisheries impacted by each Alaska catch-share program. We find that cross-fishery participation spillovers and changes in economic connectivity coincide with some, but not all, catch-share programs. Our findings suggest that economic connectivity and the potential for cross-fishery spillovers deserve serious consideration, especially when designing and evaluating EBFM policies.
| S-EPMC6410812 | biostudies-literature
Project description:In recent years, exposome research has been put forward as the next frontier for the study of human health and disease. Exposome research entails the analysis of the totality of environmental exposures and their corresponding biological responses within the human body. Increasingly, this is operationalized by big-data approaches to map the effects of internal as well as external exposures using smart sensors and multiomics technologies. However, the ethical implications of exposome research are still only rarely discussed in the literature. Therefore, we conducted a systematic review of the academic literature regarding both the exposome and underlying research fields and approaches, to map the ethical aspects that are relevant to exposome research. We identify five ethical themes that are prominent in ethics discussions: the goals of exposome research, its standards, its tools, how it relates to study participants, and the consequences of its products. Furthermore, we provide a number of general principles for how future ethics research can best make use of our comprehensive overview of the ethical aspects of exposome research. Lastly, we highlight three aspects of exposome research that are most in need of ethical reflection: the actionability of its findings, the epidemiological or clinical norms applicable to exposome research, and the meaning and action-implications of bias.
| S-EPMC7615114 | biostudies-literature
Project description:Colorectal cancer is a major public health concern in Alberta. Colorectal Cancer is the fourth most common diagnosed cancer and second overall in terms of cancer deaths in Canada. One in 14 males and 1 in 16 females aged 50-74 will be diagnosed with colorectal cancer and will have an overall 1 in 28 chance of dying from colorectal cancer. While colorectal cancer is surgically curable if diagnosed in the early stages, with five year survival rates of 90% versus 10% if detected at more advanced stages, less than 20 % of all individuals in this age bracket traditionally have undergone colorectal cancer screening. Colorectal cancer often presents with non-specific symptoms where non-cancerous polyps are commonly found. If these polyps are left in place, they may grow over time and progress from a non-cancerous mass to symptomatic cancerous tumors; therefore, early screening in those patients without symptoms may thereby prevent the progression from a non-cancerous to cancerous finding.
The hypothesis, or theory being studied in the SCOPE Pilot research study, is that implementation of a colorectal screening program would decrease colorectal cancer prevalence, increase the long-term survival ratio for patients, and decrease burden on the health care system. Moreover, early detection and treatment of colorectal cancer has the potential to increase the lifespan of patients and decrease health care costs.
The SCOPE Pilot Research study will recruit 1000 individuals between the ages of 50 - 74 of average to high risk for developing colorectal cancer as determined by their referring Gastroenterologists. Those patients who are ages 40-50 will also be eligible if they have a personal or family history of colorectal cancer. Patients referred to the SCOPE Pilot program will be further screened for eligibility, and if no exclusion criterion is present, will be invited to attend an education session and research program. The SCOPE Pilot research study will compare the current fecal occult blood testing (FOBT - Hemoccult II) with newly available FOBT blood testing along with colonoscopy therapy. It will also encompass educational information, risk stratification, screening for both average and high risk patients, and colonoscopy.
| 2071712 | ecrin-mdr-crc
Project description:BackgroundThere has been rapid development and application of digital technologies in public health domains, which are considered to have the potential to transform public health. However, this growing interest in digital technologies in public health has not been accompanied by a clarity of scope to guide policy, practice, and research in this rapidly emergent field.ObjectiveThis scoping review seeks to determine the scope of digital health as described by public health researchers and practitioners and to consolidate a conceptual framework of digital public health.MethodsThe review follows Arksey and O'Malley's framework for conducting scoping reviews with improvements as suggested by Levac et al. The search strategy will be applied to Embase, Medline, and Google Scholar. A grey literature search will be conducted on intergovernmental agency websites and country-specific websites. Titles and abstracts will be reviewed by independent reviewers, while full-text reviews will be conducted by 2 reviewers to determine eligibility based on prespecified inclusion and exclusion criteria. The data will be coded in an iterative approach using the best-fit framework analysis methodology.ResultsThis research project received funding from the British Columbia Centre for Disease Control Foundation for Population and Public Health on January 1, 2020. The initial search was conducted on June 1, 2020 and returned 6953 articles in total. After deduplication, 4523 abstracts were reviewed, and 227 articles have been included in the review. Ethical approval is not required for this review as it uses publicly available data.ConclusionsWe anticipate that the findings of the scoping review will contribute relevant evidence to health policy makers and public health practitioners involved in planning, funding, and delivering health services that leverage digital technologies. Results of the review will be strategically disseminated through publications in scientific journals, conferences, and engagement with relevant stakeholders.International registered report identifier (irrid)DERR1-10.2196/27686.
| S-EPMC8280811 | biostudies-literature
Project description:BackgroundRemission has been identified as a top priority by people with type 2 diabetes. Remission is commonly used as an outcome in research studies; however, a widely accepted definition of remission of type 2 diabetes is lacking. A report on defining remission was published (but not formally endorsed) in Diabetes Care, an American Diabetes Association (ADA) journal. This Diabetes Care report remains widely used. It was the first to suggest 3 components necessary to define the presence of remission: (1) absence of glucose-lowering therapy (GLT); (2) normoglycaemia; and (3) for duration ≥1 year. Our aim is to systematically review how remission of type 2 diabetes has been defined by observational and interventional studies since publication of the 2009 report.Methods and findingsFour databases (MEDLINE, EMBASE, Cochrane Library, and CINAHL) were searched for studies published from 1 September 2009 to 18 July 2020 involving at least 100 participants with type 2 diabetes in their remission analysis, which examined an outcome of type 2 diabetes remission in adults ≥18 years and which had been published in English since 2009. Remission definitions were extracted and categorised by glucose-lowering therapy, glycaemic thresholds, and duration. A total of 8,966 titles/abstracts were screened, and 178 studies (165 observational and 13 interventional) from 33 countries were included. These contributed 266 definitions, of which 96 were unique. The 2009 report was referenced in 121 (45%) definitions. In total, 247 (93%) definitions required the absence of GLT, and 232 (87%) definitions specified numeric glycaemic thresholds. The most frequently used threshold was HbA1c<42 mmol/mol (6.0%) in 47 (20%) definitions. Time was frequently omitted. In this study, a total of 104 (39%) definitions defined time as a duration. The main limitations of this systematic review lie in the restriction to published studies written in English with sample sizes of over 100. Grey literature was not included in the search.ConclusionsWe found that there is substantial heterogeneity in the definition of type 2 diabetes remission in research studies published since 2009, at least partly reflecting ambiguity in the 2009 report. This complicates interpretation of previous research on remission of type 2 diabetes and the implications for people with type 2 diabetes. Any new consensus definition of remission should include unambiguous glycaemic thresholds and emphasise duration. Until an international consensus is reached, studies describing remission should clearly define all 3 components of remission.Systematic review registrationPROSPERO CRD42019144619.
| S-EPMC7592769 | biostudies-literature
Project description:The attempt to describe complex diseases by solely genetic determination has not been successful. There is increasing recognition that the development of disease is often a consequence of interactions between multiple genetic and environmental factors. To date, much of the research on environmental determinants of disease has focused on single exposures generally measured at a single time point. In order to address this limitation, the concept of the exposome has been introduced as a comprehensive approach, studying the full complement of environmental exposures from conception onwards. However, exposures are vast, dynamic, and diverse, and only a small proportion can be reasonably measured due to limitations in technology and feasibility. In addition, the interplay between genes and exposure as well as between different exposures is complicated and multifaceted, which leads to difficulties in linking disease or health outcomes with exposures. The large numbers of collected samples require well-designed logistics. Furthermore, the immense data sets generated from exposome studies require a significant computational investment for both data analysis and data storage. This report summarizes discussions during an international exposome symposium held at Gunma University in Japan regarding the concept of the exposome, challenges in exposome research, and future perspectives in the field.
| S-EPMC6631702 | biostudies-literature
Project description:Objectives:Palliative care addresses the suffering of patients and families affected by progressive illness through the management of medical symptoms, psychosocial issues, and spiritual concerns. Although there is an emerging interest in applying palliative care to Parkinson's disease (PD), potential palliative care needs have not been systematically investigated in PD patients. Our primary objective was to determine the prevalence of clinically significant symptomatic, psychosocial, and spiritual issues in PD and understand their impact on health-related quality of life (HRQOL). Secondary objectives included comparing the level of palliative care needs of PD patients to advanced cancer patients and assessing preferences for advance care planning. Methods:Ninety PD patients and 47 patients with advanced cancer were surveyed regarding potential palliative care needs, including symptom burden, mood, anticipatory grief, and spiritual well-being. PD patients completed additional scales regarding HRQOL, motor symptoms, cognitive impairment, and preferences regarding advance care planning. Results:Potential palliative care needs, including high symptom burden and grief, were common in PD patients and contributed to HRQOL even when controlling for depression and motor severity. In all domains investigated, PD patients had similar or higher levels of palliative care needs as patients with advanced cancer. PD patients expressed a desire to complete advance directives early in the disease course and with a physician. Conclusions:Palliative care needs contribute to HRQOL in PD and are of similar severity as cancer patients. This study supports and helps focus efforts to integrate palliative care principles in PD care across the spectrum of the disease.
| S-EPMC6384178 | biostudies-literature