data collection

数据收集
  • 文章类型: Journal Article
    将健康信息集成到大学信息系统中对于增强学生的支持和福祉具有巨大的潜力。尽管越来越多的研究强调了大学生面临的问题,包括压力,抑郁症,残疾,在信息学领域,很少在机构层面纳入卫生技术。
    本研究旨在调查大学系统内健康信息集成的现状,并提供设计建议以解决现有的差距和机会。
    我们使用以用户为中心的方法与利益相关者进行访谈和焦点小组会议,以收集对系统的全面见解和要求。方法涉及数据收集,分析,和建议的工作流的开发。
    这项研究的发现揭示了当前在大学信息系统中处理健康和残疾数据的过程中存在的缺陷。在我们的结果中,我们讨论了将健康相关信息集成到学生信息系统中的一些要求,如隐私和保密,及时沟通,任务自动化,残疾资源。我们提出了一个工作流程,将流程分为两个不同的组成部分:健康和残疾系统以及生活质量和健康的衡量标准。拟议的工作流程强调了学术顾问在促进支持和加强利益相关者之间的协调方面的重要作用。
    为了简化工作流程,利益相关者之间的有效协调和重新设计大学信息系统至关重要。然而,实施新系统将需要大量资金和资源。我们强烈强调加强标准化和监管以支持健康和残疾信息系统要求的重要性。通过采用标准化的做法和条例,我们可以确保所需支持系统的顺利有效实施。
    UNASSIGNED: Integrating health information into university information systems holds significant potential for enhancing student support and well-being. Despite the growing body of research highlighting issues faced by university students, including stress, depression, and disability, little has been done in the informatics field to incorporate health technologies at the institutional level.
    UNASSIGNED: This study aims to investigate the current state of health information integration within university systems and provide design recommendations to address existing gaps and opportunities.
    UNASSIGNED: We used a user-centered approach to conduct interviews and focus group sessions with stakeholders to gather comprehensive insights and requirements for the system. The methodology involved data collection, analysis, and the development of a suggested workflow.
    UNASSIGNED: The findings of this study revealed the shortcomings in the current process of handling health and disability data within university information systems. In our results, we discuss some requirements identified for integrating health-related information into student information systems, such as privacy and confidentiality, timely communication, task automation, and disability resources. We propose a workflow that separates the process into 2 distinct components: a health and disability system and measures of quality of life and wellness. The proposed workflow highlights the vital role of academic advisors in facilitating support and enhancing coordination among stakeholders.
    UNASSIGNED: To streamline the workflow, it is vital to have effective coordination among stakeholders and redesign the university information system. However, implementing the new system will require significant capital and resources. We strongly emphasize the importance of increased standardization and regulation to support the information system requirements for health and disability. Through the adoption of standardized practices and regulations, we can ensure the smooth and effective implementation of the required support system.
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  • 文章类型: Journal Article
    在相对默默无闻的长途旅行之后,定性研究在学校心理学领域正在被接受。随着越来越多的学校心理学研究人员和研究生采用它作为他们的学术努力的一部分,我们反思了自2006年以来在学校心理学上发表的定性研究,包括到目前为止所做的工作以及未来可以改进的工作。这种学术回顾行为可以通过帮助确定优势和劣势领域来加强学校心理学的定性研究。我们阅读了2006年至2021年间发表在七种学校心理学期刊上的所有定性研究,以了解它们的方法论特征。在第一节中,我们讨论方法论趋势(例如,调查方法,数据收集方法,数据分析策略),我们发现。在第二节中,我们反思了这个语料库,并确定了一些对我们突出的定性方法的常见误解。我们澄清了这些误解,并在这些文章中强调了一些可以被其他研究人员采用的“良好”实践的例子。最后在第三节,我们提供了一些关于发展学校心理学家的理解和能力进行定性研究的一般性建议。
    After a long journey in relative obscurity, qualitative research is being accepted in the field of school psychology. As more school psychology researchers and graduate students adopt it as part of their scholarly endeavors, we reflect on the qualitative research published in school psychology since 2006 in terms of what has been done so far and what can be improved going forward. This act of academic retrospection can strengthen qualitative research in school psychology by helping to identify areas of strength and weakness. We read all qualitative studies published in seven school psychology journals between 2006 and 2021 to understand their methodological character. In Section I, we discuss the methodological trends (e.g., approach to inquiry, data collection methods, data analysis strategies) we found. In Section II, we reflect upon this corpus and identify some common misconceptions about qualitative methodologies that stood out to us. We clarify these misconceptions and highlight some examples of \'good\' practices in these articles that could be adopted by other researchers. Finally in Section III, we provide some general recommendations about developing school psychologists\' understanding of and the ability to conduct qualitative research.
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  • 文章类型: Journal Article
    背景:英格兰有超过150万儿童和年轻人需要特殊教育(SEN),英国有超过160,000名年轻人在特殊学校或替代条款(AP)设置。与非SEN同龄人相比,患有SEN的年轻人面临着心理健康和幸福感较差的风险。然而,有一系列与学校相关的挑战和研究挑战与及时发现困难有关。
    目的:这项Delphi研究旨在确定利益相关者的优先事项列表,以改善基于学校的SEN年轻人的心理健康和幸福感测量,在聚合级别上,在中等特殊学校或AP设置内。次要目标是为学校福祉调查的实施提供信息,提高对特殊学校或AP设置的参与度,并提高SEN儿童和年轻人的调查回应率。
    方法:将进行混合方法德尔菲研究,包括范围审查和与学校工作人员和研究人员的初步焦点小组,以确定关键问题。随后将进行两轮Delphi调查,以确定利益相关者的优先事项清单,以改善特殊学校和AP设置中总体水平的心理健康和福祉的衡量。将举行最后的利益相关方研讨会,讨论调查结果。建议清单将作为特殊学校和AP设置的报告起草。
    结果:该研究已获得伦敦大学学院研究伦理委员会的伦理批准。第一阶段范围审查已经开始。焦点小组的招聘将于2024年秋季开始。第一轮德尔福调查将于2025年初开始,第二轮德尔福调查将于2025年春季开始。最终研讨会将于2025年年中开始,最终结果预计将于2025年年底开始。
    结论:需要为特殊学校和AP设置提供明确的建议,以改善SEN年轻人的心理健康和福祉问题的测量。还需要向实施基于学校的福祉调查的研究人员提出建议,包括#BeeWell计划,使他们能够提高他们在特殊学校和AP设置的参与,并确保调查是可访问的。
    PRR1-10.2196/58610。
    BACKGROUND: There are more than 1.5 million children and young people in England with special educational needs (SEN), with over 160,000 young people in the United Kingdom attending a special school or alternative provision (AP) setting. Young people with SEN have been found to be at risk for poorer mental health and well-being than non-SEN peers. However, there is a range of both school-related and research challenges associated with identifying difficulties in a timely manner.
    OBJECTIVE: This Delphi study aims to determine a list of stakeholder priorities for improving school-based measurement of mental health and well-being among young people with SEN, at an aggregated level, within secondary special school or AP settings. A secondary objective is to inform the implementation of school-based well-being surveys, improve engagement in special schools or AP settings, and improve survey response rates among children and young people with SEN.
    METHODS: A mixed methods Delphi study will be conducted, including a scoping review and preliminary focus groups with school staff members and researchers to establish key issues. This will be followed by a 2-round Delphi survey to determine a list of stakeholder priorities for improving the measurement of mental health and well-being at an aggregate level within special schools and AP settings. A final stakeholder workshop will be held to discuss the findings. A list of recommendations will be drafted as a report for special schools and AP settings.
    RESULTS: The study has received ethical approval from the University College London Research Ethics Committee. The stage 1 scoping review has commenced. Recruitment for focus groups will begin in Autumn 2024. The first round of the Delphi survey will commence in early 2025, and the second round of the Delphi survey in the spring of 2025. The final workshop will commence in mid-2025 with final results expected in late 2025.
    CONCLUSIONS: There is a need for clear recommendations for special schools and AP settings on priorities for improving the measurement of mental health and well-being problems among young people with SEN. There is also a need for recommendations to researchers implementing school-based well-being surveys, including the #BeeWell program, to enable them to improve their engagement in special schools and AP settings and ensure surveys are accessible.
    UNASSIGNED: PRR1-10.2196/58610.
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  • 文章类型: Journal Article
    本范围审查旨在描述使用基于艺术的数据收集方法对移民和种族化的老年人进行的研究范围。次要目标是确定在该人群中使用这些方法的挑战和优势。本评论使用Arksey和O'Malley的五阶段范围审查框架,最终包括16个参考文献。增强社会联系,提高调查结果的透明度和质量,和自我授权是使用基于艺术的数据收集方法的关键优势。确定的挑战包括资源限制,文化和语言障碍,以及有意义的参与的障碍。只有少数研究对移民和种族化的老年人使用了基于艺术的方法。基于艺术的方法需要对该人群进行独特的方法调整,但有可能增加对研究活动的参与,研究结果的真实性和老年人的赋权。
    This scoping review aims to describe the range of research studies using arts-based data collection methods with immigrant and racialized older adults. A secondary aim is to identify challenges and strengths of using these approaches with this population. This review uses Arksey and O\'Malley\'s five-stage scoping review framework with a final number of 16 references included for the study. Enhanced social connectedness, increased transparency and quality of findings, and self-empowerment were key strengths of using arts-based approaches for data collection. Challenges identified included resource limitations, cultural and language barriers, and barriers to meaningful engagement. Only a small number of studies have utilized arts-based methods with immigrant and racialized older adults. Arts-based approaches require unique methodological adaptations with this population but have the potential to increase engagement in research activities, authenticity of research findings and empowerment of older adults.
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  • 文章类型: Journal Article
    照片启发是一种定性数据收集技术,其中研究人员将照片或其他视觉图像作为参与者访谈的一部分。研究人员可能会提供照片,也可能会要求参与者将照片带到采访中。这种技术增强了口头定性访谈的广度和深度。使用照片启发可以增强定性研究的严谨性。这种数据收集技术既有优点也有缺点。伦理问题值得特别考虑。
    Photo elicitation is a qualitative data collection technique in which the researcher includes photographs or other visual images as part of participant interviews. The researcher might provide the photographs or might ask the participants to bring photographs to the interview. This technique enhances the breadth and depth of verbal qualitative interviews. The use of photo elicitation can enhance the rigor of a qualitative study. There are both advantages and disadvantages of this data collection technique. Ethical issues warrant special consideration.
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  • 文章类型: Journal Article
    背景:通过手机发送的SMS文本消息是人际交往的一种常见手段。SMS文本消息调查由于其可行性和患者可接受性而在医疗保健和研究中获得了吸引力。然而,在实施短信调查时出现了挑战,尤其是针对边缘化人群时,由于访问电话和数据的障碍以及通信困难。在初级保健中,传统调查(纸质和在线)往往面临低回应率,这在弱势群体中特别明显,由于经济限制,语言障碍,和时间限制。
    目的:本研究旨在调查基于SMS短信的患者招募和调查在社会经济较低地区的一般实践中的潜力。这项研究是嵌套在减少酒精伤害的一般实践项目,旨在减少酒精相关的伤害,通过筛选在澳大利亚一般实践。
    方法:本研究遵循2步SMS文本消息数据收集过程。向患者发送了带有在线调查链接的初始SMS短信,随后每3个月对同意的参与者进行调查。采访了当地基层卫生网络组织工作人员,参与实践的工作人员,和临床医生。使用实施研究综合框架的结构对定性数据进行了分析。
    结果:在6种一般做法中,4人能够向患者发送SMS短信。向8333名患者发送了最初的SMS文本消息,并收到了702个回复(8.2%),其中大多数不是来自低收入群体。这种低的初始反应与正在进行的3个月SMS短信调查的改善的反应率相反(55/107,3个月时为51.4%;29/67,6个月时为43.3%;44/102,9个月时为43.1%)。我们采访了4名全科医生,4名护士,和4名行政人员来自5种不同的做法。定性数据揭示了参与边缘化群体的障碍,包括有限的智能手机接入,有限的财务能力(电话,互联网,和Wi-Fi信用),语言障碍,识字问题,心理健康状况,和身体限制,如手动灵活性和视力问题。实践经理和临床医生提出了克服这些障碍的策略,包括在受信任的空间中使用纸质调查,在完成调查期间提供援助,并提供酬金支持参与。
    结论:虽然针对初级保健研究的SMS短信调查可能对更广泛的人群有用,需要作出更多努力,以确保边缘化群体的代表性和参与。更密集的方法,如亲自收集数据,可能更适合在初级保健研究中捕捉低收入群体的声音。
    RR2-10.3399/BJGPO.2021.0037。
    BACKGROUND: SMS text messages through mobile phones are a common means of interpersonal communication. SMS text message surveys are gaining traction in health care and research due to their feasibility and patient acceptability. However, challenges arise in implementing SMS text message surveys, especially when targeting marginalized populations, because of barriers to accessing phones and data as well as communication difficulties. In primary care, traditional surveys (paper-based and online) often face low response rates that are particularly pronounced among disadvantaged groups due to financial limitations, language barriers, and time constraints.
    OBJECTIVE: This study aimed to investigate the potential of SMS text message-based patient recruitment and surveys within general practices situated in lower socioeconomic areas. This study was nested within the Reducing Alcohol-Harm in General Practice project that aimed to reduce alcohol-related harm through screening in Australian general practice.
    METHODS: This study follows a 2-step SMS text message data collection process. An initial SMS text message with an online survey link was sent to patients, followed by subsequent surveys every 3 months for consenting participants. Interviews were conducted with the local primary health network organization staff, the participating practice staff, and the clinicians. The qualitative data were analyzed using constructs from the Consolidated Framework for Implementation Research.
    RESULTS: Out of 6 general practices, 4 were able to send SMS text messages to their patients. The initial SMS text message was sent to 8333 patients and 702 responses (8.2%) were received, most of which were not from a low-income group. This low initial response was in contrast to the improved response rate to the ongoing 3-month SMS text message surveys (55/107, 51.4% at 3 months; 29/67, 43.3% at 6 months; and 44/102, 43.1% at 9 months). We interviewed 4 general practitioners, 4 nurses, and 4 administrative staff from 5 of the different practices. Qualitative data uncovered barriers to engaging marginalized groups including limited smartphone access, limited financial capacity (telephone, internet, and Wi-Fi credit), language barriers, literacy issues, mental health conditions, and physical limitations such as manual dexterity and vision issues. Practice managers and clinicians suggested strategies to overcome these barriers, including using paper-based surveys in trusted spaces, offering assistance during survey completion, and offering honoraria to support participation.
    CONCLUSIONS: While SMS text message surveys for primary care research may be useful for the broader population, additional efforts are required to ensure the representation and involvement of marginalized groups. More intensive methods such as in-person data collection may be more appropriate to capture the voice of low-income groups in primary care research.
    UNASSIGNED: RR2-10.3399/BJGPO.2021.0037.
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  • 文章类型: Journal Article
    背景:NFDI4Health是由德国研究基金会资助的财团,旨在根据FAIR原则使结构化健康数据在国际上可查找和可访问。它的目标是将数据用户和数据持有组织(DHO)聚集在一起。它主要考虑进行流行病学和公共卫生研究或临床试验的DHO。
    方法:为此类DHO提供了本地数据中心(LDH),以将其组织内的分散本地研究数据管理与通过集中式NFDI4Health服务(如德国中央健康研究中心)发布可共享元数据的选项连接起来。LDH平台基于FAIRDOMSEEK,提供了一个完整而灵活的,健康研究数据的本地受控数据和信息管理平台。已开发出适用于研究及其相应资源的量身定制的NFDI4Health元数据模式,该模式由LDH软件完全支持,例如,元数据传输到其他NFDI4Health服务。
    结果:除了现有的SEEK元数据结构之外,SEEK平台已经在技术上得到了增强,以支持针对用户社区需求而定制的扩展元数据结构。
    结论:对于LDH和MDS,NFDI4Health为所有DHO提供了一个标准化、免费和开源的研究数据管理平台,用于结构化健康数据的FAIR交换。
    BACKGROUND: NFDI4Health is a consortium funded by the German Research Foundation to make structured health data findable and accessible internationally according to the FAIR principles. Its goal is bringing data users and Data Holding Organizations (DHOs) together. It mainly considers DHOs conducting epidemiological and public health studies or clinical trials.
    METHODS: Local data hubs (LDH) are provided for such DHOs to connect decentralized local research data management within their organizations with the option of publishing shareable metadata via centralized NFDI4Health services such as the German central Health Study Hub. The LDH platform is based on FAIRDOM SEEK and provides a complete and flexible, locally controlled data and information management platform for health research data. A tailored NFDI4Health metadata schema for studies and their corresponding resources has been developed which is fully supported by the LDH software, e.g. for metadata transfer to other NFDI4Health services.
    RESULTS: The SEEK platform has been technically enhanced to support extended metadata structures tailored to the needs of the user communities in addition to the existing metadata structuring of SEEK.
    CONCLUSIONS: With the LDH and the MDS, the NFDI4Health provides all DHOs with a standardized and free and open source research data management platform for the FAIR exchange of structured health data.
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  • 文章类型: Journal Article
    Wildlife resources are strategic resources of a country, and the investigation of which is a key task for effective management in protection and utilization. Since the 1990s, two national surveys of terrestrial wildlife resources have been carried out in China, and the situation of wildlife resources has been known to a certain extent. Due to the complexity and difficulty of national wildlife survey, we are still not able to grasp the background and dynamics of wildlife resources as a whole promptly and effectively. The results and effectiveness of wildlife resources investigation will directly affect the decision-making related in wildlife protection. According to Law of the People\'s Republic of China on the Protection of Wildlife and Regulations of the People\'s Republic of China for the Implementation of the Protection of Terrestrial Wildlife, it is imperative to carry out the third national survey of terrestrial wildlife resources, and to be integrated with the national strategy of ecological civilization construction. The aims of this review were to summarize the earlier experiences in time, to further improve the investigation scheme and technical methods, to serve the third national survey of terrestrial wildlife resources, in addition to obtain more comprehensive and reliable data of wildlife resources, grasp the development trend of domestic wildlife resources, and provide more effective supports for the wildlife conservation in China.
    野生动物资源是国家的战略性资源,对其开展资源调查是有效保护和利用管理的关键性工作。我国自1990年代以来共开展了两次全国性野生动物资源调查,在一定程度和范围上掌握了国内资源状况。但由于全国性野生动物调查的复杂性和困难性,尚未能在整体上及时有效地把握国内野生动物资源本底及其动态。野生动物资源调查成效将直接影响野生动物保护相关决策的制订。根据《中华人民共和国野生动物保护法》和《中华人民共和国陆生野生动物保护管理实施条例》要求,结合生态文明建设国家战略,开展第三次全国野生动物资源调查势在必行。本文的目的在于及时总结历史经验,进一步完善调查方案和技术方法,为全国陆生野生动物资源调查服务,以期获取更全面、可靠的野生动物资源数据,掌握我国野生动物资源发展态势,为我国野生动物保护与管理提供有力支撑。.
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  • 文章类型: Journal Article
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  • 文章类型: Journal Article
    目的:脑性瘫痪(CP)是一组神经系统疾病,对儿童的发育有着深远的影响。确定围产期CP的危险因素可能会改善预防和治疗策略。本研究旨在使用机器学习(ML)识别CP的早期预测因子。
    方法:这是一项回顾性病例对照研究,使用来自两个基于人口的数据库的数据,斯洛文尼亚国家围产期信息系统和斯洛文尼亚脑瘫登记处。评估了多种ML算法,以确定预测CP的最佳模型。
    方法:这是一项基于人群的研究,研究对象是斯洛文尼亚14个产房之一出生的CP和对照受试者。
    方法:共382例CP,出生于2002年至2017年,被确定。以3:1的对照与病例比选择对照,具有匹配的胎龄和出生多重性。分析中排除了先天性异常的CP病例(n=44)。该研究共纳入338例CP病例和1014例对照。
    方法:135个与围产期和母体因素有关的变量。
    方法:接收机工作特性(ROC),敏感性和特异性。
    结果:随机梯度增强ML模型(271例病例和812例对照)显示出最高的平均ROC值,为0.81(平均灵敏度=0.46,平均特异性=0.95)。使用具有验证数据集(67例病例和202例对照)的该模型导致ROC曲线下面积为0.77(平均灵敏度=0.27,平均特异性=0.94)。
    结论:我们使用早期围产期因素的最终ML模型不能可靠地预测我们队列中的CP。未来的研究应该用额外的因素来评估模型,如遗传和神经成像数据。
    OBJECTIVE: Cerebral palsy (CP) is a group of neurological disorders with profound implications for children\'s development. The identification of perinatal risk factors for CP may lead to improved preventive and therapeutic strategies. This study aimed to identify the early predictors of CP using machine learning (ML).
    METHODS: This is a retrospective case-control study, using data from the two population-based databases, the Slovenian National Perinatal Information System and the Slovenian Registry of Cerebral Palsy. Multiple ML algorithms were evaluated to identify the best model for predicting CP.
    METHODS: This is a population-based study of CP and control subjects born into one of Slovenia\'s 14 maternity wards.
    METHODS: A total of 382 CP cases, born between 2002 and 2017, were identified. Controls were selected at a control-to-case ratio of 3:1, with matched gestational age and birth multiplicity. CP cases with congenital anomalies (n=44) were excluded from the analysis. A total of 338 CP cases and 1014 controls were included in the study.
    METHODS: 135 variables relating to perinatal and maternal factors.
    METHODS: Receiver operating characteristic (ROC), sensitivity and specificity.
    RESULTS: The stochastic gradient boosting ML model (271 cases and 812 controls) demonstrated the highest mean ROC value of 0.81 (mean sensitivity=0.46 and mean specificity=0.95). Using this model with the validation dataset (67 cases and 202 controls) resulted in an area under the ROC curve of 0.77 (mean sensitivity=0.27 and mean specificity=0.94).
    CONCLUSIONS: Our final ML model using early perinatal factors could not reliably predict CP in our cohort. Future studies should evaluate models with additional factors, such as genetic and neuroimaging data.
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