citizen science

公民科学
  • 文章类型: Journal Article
    人为的栖息地破坏和气候变化正在重塑全球植物的地理分布。然而,我们仍然无法在高空间绘制物种变化图,temporal,和分类分辨率。这里,我们开发了一种深度学习模型,该模型使用来自加利福尼亚州的遥感图像与50万个公民科学观测数据进行训练,可以绘制2000多种植物物种的分布图。我们的模型-Deepbiosphere-不仅优于许多常见的物种分布建模方法(AUC0.95vs.0.88),但可以以高达几米的分辨率绘制物种图,并高精度地精细描绘植物群落,包括红木国家公园的原始和砍伐的森林。这些精细的预测可以进一步用于绘制人类改变景观中栖息地破碎化的强度和急剧的生态系统过渡。此外,从频繁收集的遥感数据中,深层生物圈可以在2年的时间内检测到严重野火对植物群落组成的快速影响。这些发现表明,将公共地球观测和公民科学与深度学习相结合,可以为全球实时监测生物多样性变化的自动化系统铺平道路。
    Anthropogenic habitat destruction and climate change are reshaping the geographic distribution of plants worldwide. However, we are still unable to map species shifts at high spatial, temporal, and taxonomic resolution. Here, we develop a deep learning model trained using remote sensing images from California paired with half a million citizen science observations that can map the distribution of over 2,000 plant species. Our model-Deepbiosphere-not only outperforms many common species distribution modeling approaches (AUC 0.95 vs. 0.88) but can map species at up to a few meters resolution and finely delineate plant communities with high accuracy, including the pristine and clear-cut forests of Redwood National Park. These fine-scale predictions can further be used to map the intensity of habitat fragmentation and sharp ecosystem transitions across human-altered landscapes. In addition, from frequent collections of remote sensing data, Deepbiosphere can detect the rapid effects of severe wildfire on plant community composition across a 2-y time period. These findings demonstrate that integrating public earth observations and citizen science with deep learning can pave the way toward automated systems for monitoring biodiversity change in real-time worldwide.
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  • 文章类型: Journal Article
    公民科学可以成为促进健康技术创新成功实施的有力方法,关心或幸福。让经验专家作为技术创新的共同研究人员或共同设计师,促进了相互学习,社区建设,和赋权。通过利用预期用户的专业知识,创新有更好的机会被采纳并解决复杂的健康相关问题。由于公民科学仍然是健康和福祉的相对较新的实践,对成功合作的有效方法和准则知之甚少。本范围审查旨在提供以下方面的见解:(1)公民参与当前健康技术创新研究的水平,关心或幸福,(2)使用的参与式方法,(3)研究人员学到的教训。根据PRISMA-ScR指南进行了范围审查并进行了报告。该搜索于2021年1月在SCOPUS中进行,包括2016年至2020年之间发表的同行评审期刊和会议论文。最终选择(N=83)仅限于明确关注健康技术创新的实证研究,关心或福祉,并参与公民在合作或更高的水平。我们的研究结果表明,人们对公民科学作为一种包容性研究方法的兴趣与日俱增。公民主要参与创新的设计阶段,较少参与准备工作,数据分析或报告阶段。在其中一个研究阶段,有八个记录使公民处于领先地位。研究人员使用不同的术语来描述他们的方法论方法,包括参与式设计,共同设计,基于社区的参与式研究,共同创造,公众和患者的参与,参与行动研究,以用户为中心的设计和公民科学。我们选择的案例表明,成功的公民科学项目与合作者建立了结构和纵向的伙伴关系,使用定位和自适应的研究方法,并拥有愿意放弃传统权力动力并参与相互学习的研究人员。
    Citizen science can be a powerful approach to foster the successful implementation of technological innovations in health, care or well-being. Involving experience experts as co-researchers or co-designers of technological innovations facilitates mutual learning, community building, and empowerment. By utilizing the expert knowledge of the intended users, innovations have a better chance to get adopted and solve complex health-related problems. As citizen science is still a relatively new practice for health and well-being, little is known about effective methods and guidelines for successful collaboration. This scoping review aims to provide insight in (1) the levels of citizen involvement in current research on technological innovations for health, care or well-being, (2) the used participatory methodologies, and (3) lesson\'s learned by the researchers.A scoping review was conducted and reported in accordance with the PRISMA-ScR guidelines. The search was performed in SCOPUS in January 2021 and included peer-reviewed journal and conference papers published between 2016 and 2020. The final selection (N = 83) was limited to empirical studies that had a clear focus on technological innovations for health, care or well-being and involved citizens at the level of collaboration or higher. Our results show a growing interest in citizens science as an inclusive research approach. Citizens are predominantly involved in the design phase of innovations and less in the preparation, data-analyses or reporting phase. Eight records had citizens in the lead in one of the research phases.Researcher use different terms to describe their methodological approach including participatory design, co-design, community based participatory research, co-creation, public and patient involvement, partcipatory action research, user-centred design and citizen science. Our selection of cases shows that succesful citizen science projects develop a structural and longitudinal partnership with their collaborators, use a situated and adaptive research approach, and have researchers that are willing to abandon traditional power dynamics and engage in a mutual learning experience.
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  • 文章类型: Journal Article
    通过使用基本生物多样性变量,可以获得更高的大规模和长期生物多样性监测效率,其中物种种群规模为保护计划提供了关键数据。对实际种群规模的相关估计和评估对于物种保护至关重要,特别是在当前全球生物多样性侵蚀的背景下。然而,关于人口规模的知识差异很大,取决于物种保护状况和范围。虽然最受威胁或限制范围的物种通常受益于详尽的计数和调查,监测常见和广泛的物种种群规模往往被忽视,或者更具有挑战性。在这样的背景下,公民科学(CS)是通过各种志愿者的参与长期监测常见物种的强大工具,允许长期和大空间尺度的数据采集。尽管抽样工作大幅增加,可探测性问题意味着,即使是常见的物种也可能在合适的地点被忽视。结构化CS方案的使用,包括反复探访,能够对检测过程进行建模,允许对人口规模估计进行可靠的推断。这里,我们依靠一个大型的法国结构化CS方案(EPOC-ODF),该方案包括在2021-2023年繁殖季节收集的3,873个地点的27,156个完整清单,使用分层距离采样(HDS)估计63种常见鸟类的种群数量.将这些种群规模估计与以前基于专家的法国繁殖鸟类地图集估计进行了比较,这没有考虑到可检测性问题。我们发现,前法国繁殖鸟类地图集的种群规模估计低于使用HDS估计的65%物种的种群规模。这种较低估计的普遍性可能是由于从以前的地图集使用的基于专家的半定量评估中推断的更保守的估计。我们还发现了具有远程歌曲的物种,例如普通杜鹃(Cuculuscanorus),欧亚Hoopoe(Upupaepops)或欧亚黑鸟(Turdusmerula)有,相比之下,在以前的地图集中,估计的人口规模高于我们的HDS模型。我们的研究强调需要依靠合理的统计方法来确保可靠的生态推论,并具有足够的不确定性估计,并主张更多地依赖结构化CS来支持长期的生物多样性监测。
    Higher efficiency in large-scale and long-term biodiversity monitoring can be obtained through the use of Essential Biodiversity Variables, among which species population sizes provide key data for conservation programs. Relevant estimations and assessment of actual population sizes are critical for species conservation, especially in the current context of global biodiversity erosion. However, knowledge on population size varies greatly, depending on species conservation status and ranges. While the most threatened or restricted-range species generally benefit from exhaustive counts and surveys, monitoring common and widespread species population size tends to be neglected or is simply more challenging to achieve. In such a context, citizen science (CS) is a powerful tool for the long-term monitoring of common species through the engagement of various volunteers, permitting data acquisition on the long term and over large spatial scales. Despite this substantially increased sampling effort, detectability issues imply that even common species may remain unnoticed at suitable sites. The use of structured CS schemes, including repeated visits, enables to model the detection process, permitting reliable inferences of population size estimates. Here, we relied on a large French structured CS scheme (EPOC-ODF) comprising 27,156 complete checklists over 3,873 sites collected during the 2021-2023 breeding seasons to estimate the population size of 63 common bird species using hierarchical distance sampling (HDS). These population size estimates were compared to the previous expert-based French breeding bird atlas estimations, which did not account for detectability issues. We found that population size estimates from the former French breeding bird atlas were lower than those estimated using HDS for 65% of species. Such a prevalence of lower estimations is likely due to more conservative estimates inferred from semi-quantitative expert-based assessments used for the previous atlas. We also found that species with long-range songs such as the Common Cuckoo (Cuculus canorus), Eurasian Hoopoe (Upupa epops) or the Eurasian Blackbird (Turdus merula) had, in contrast, higher estimated population sizes in the previous atlas than in our HDS models. Our study highlights the need to rely on sound statistical methodology to ensure reliable ecological inferences with adequate uncertainty estimation and advocates for a higher reliance on structured CS in support of long-term biodiversity monitoring.
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  • 文章类型: Journal Article
    近年来,人们对公民科学(CS)重新产生了兴趣,因为它提供了一个有趣的愿景,使具有科学素养的人群参与科学研究和政策制定。尽管如此,公民科学家仍然是研究不足的人群,可能是由于他们努力的自愿和兼职性质。这里,提供了使用在线调查收集的CS从业人员经验数据集。调查样本包括100名活跃于不同CS项目的成年人(18岁以上)。该调查包含47个用于定量分析的问题。问题围绕着几个广泛的主题——参与者人口统计,项目配置文件,公民科学的经验,数据收集实践,管理,传播,开放研究原则的知识,接受培训。该数据集提供了进一步实证研究的潜力,或作为后续调查的基线,任何计划CS计划的人都会感兴趣。调查表是其他国家的准备部署工具,区域,或主动调查。
    There has been renewed interest in Citizen Science (CS) in recent years as it offers an intriguing vision of enabling a scientifically literate population engage in scientific investigations and policy formation. Nonetheless, citizen scientists remain an understudied population, possibly due to the voluntary and part-time nature of their endeavours. Here, a dataset of CS practitioners\' experiences collected using an online survey is presented. The survey sample comprises 100 adults (18+) active in diverse CS projects. The survey contains 47 questions designed for quantitative analysis. Questions cluster around several broad themes - participant demographics, project profiles, experience in citizen science, data collection practices, management, dissemination, knowledge of open research principles, and training received. The dataset offers the potential for further empirical research or as a baseline for subsequent surveys, and will interest anybody planning a CS initiative. The questionnaire constitutes a ready-to-deploy instrument for additional country, region, or initiative-level surveys.
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  • 文章类型: Journal Article
    关于生物多样性的公民科学数据经历了显著的增长,很大程度上是由促进数据共享的技术进步推动的。近年来,移动应用程序大大促进了这些数据的收集和共享。虽然这些可获取的信息无疑是有价值的,当用于高质量研究时,我们必须考虑这些数据中存在的许多偏见。在这项研究中,我们分析伊比利亚半岛鸟类的公民科学数据,在过滤重复项之后,包含超过2300万条唯一记录(即,多次上传相同观察的实例)。使用10×10公里的正方形网格,我们提供有关经过充分调查的细胞(完整性)以及时间信息,分类学,地理,和土地使用范围。我们发现信息的完整性普遍较高,在主要城市和沿海地区等人口稠密地区的覆盖范围更好,以及受欢迎的观鸟目的地,经常被访问。地中海生态区和湿地的测量水平最高。此外,我们观察到自20世纪80年代以来,伊比利亚地区所有鸟类的时间覆盖率和广泛的分类覆盖率增加。我们的结果强调了公民科学在许多地方的实用性,以10×10km单元格表示。然而,他们还强调了部分地区的数据完整性不足,特别是在森林或人烟稀少的地区。这些发现不仅确定了适合鸟类多样性或保护研究的细胞,而且还指出了应鼓励公民驱动的鸟类记录工作的领域。
    Citizen science data on biodiversity has experienced significant growth, largely driven by advancements in technology that facilitate data sharing. In recent years, mobile applications have provided a substantial boost to both the collection and sharing of this data. While this accessible information is undoubtedly valuable, we must consider the numerous biases present in this data when used for high-quality research. In this study, we analyse citizen science data for the birds of the Iberian Peninsula, comprising over 23 million unique records after filtering for duplicates (i.e., instances where the same observation was uploaded more than once). Using a 10 × 10 km square grid, we present information on well-surveyed cells (completeness) as well as temporal, taxonomic, geographical, and land use coverages. We found that the completeness of information is generally high, with better coverage around densely populated areas such as major cities and coastal regions, as well as popular birding destinations, which are frequently visited. The Mediterranean ecoregion and wetlands exhibit the highest levels of surveying. Furthermore, we observed an increase in temporal coverage since the 1980s and broad taxonomic coverage across all bird orders in the Iberian region. Our results underscore the utility of citizen science for many locations, as expressed in 10 × 10 km cells. However, they also highlight the inadequate data completeness across part of the territory, particularly in forested or sparsely inhabited areas. These findings not only identify cells suitable for bird diversity or conservation studies but also indicate areas where citizen-driven bird recording efforts should be encouraged.
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  • 文章类型: Journal Article
    这项研究评估了水质,基于用水的目的,在巴尔巴扎市的家庭中,古董省,菲律宾,根据国家水质准则。通过使用水质测量的描述性研究,调查了当地人采取的经验/传统用水行动对他们使用的水质的影响。社区的大部分饮用水没有达到规定的酸碱度标准,总溶解固体(TDS),或者大肠杆菌。自来水和井水样品通常符合pH和TDS标准。然而,大肠杆菌(E.大肠杆菌)和大肠杆菌被检测到,井水中的氮污染也得到了证实。当地做法,比如用旧衣服作为井泵的过滤器,将大肠杆菌浓度从0-10CFU/mL增加到超过100CFU/mL的数量过多(TNTC)水平。在桶中储存井水也影响大肠杆菌和大肠杆菌的浓度。这种经验/传统的用水行为产生了使当地人暴露于有害微生物的高风险。这项研究将公民科学整合到当地水资源管理的方法中,这可以帮助州长,从业者,和公民,特别是在东南亚,存在牢固的社区关系的地方。
    This research assessed water quality, based on the purpose of water consumption, in households in the municipality of Barbaza, the Province of Antique, Philippines, according to the national water quality guidelines. The effects of the empirical/traditional water use actions taken by local people on the quality of the water they use were investigated through a descriptive study using water quality measurements. Most of the drinking water in the community did not meet the required standards of pH, total dissolved solids (TDS), or coliform. Tap water and well water samples generally met the pH and TDS standards. However, Escherichia coli (E. coli) and coliform were detected, and nitrogen pollution in well water was also confirmed. Local practices, such as using old clothes as filters for well pumps, increased the coliform concentration from 0-10 CFU/mL to too numerous to count (TNTC) levels of more than 100 CFU/mL. Storing well water in a bucket also affected both E. coli and coliform concentrations. Such empirical/traditional water use actions create a high risk of exposing local people to harmful microorganisms. This research integrated citizen science into the methodology for local water management, which could assist governors, practitioners, and citizens, particularly in Southeast Asia, where strong community relationships exist.
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  • 文章类型: Journal Article
    心房颤动(AF)是西方世界最常见的心律紊乱。从2010年到2019年,全球房颤患病率从3350万上升到5900万,强调为患者制定公平治疗的重要性。这种疾病与心悸等症状有关,头晕,疲劳,呼吸急促,和认知功能障碍。此外,AF增加发生中风和心力衰竭的风险。尽管对可能导致房颤发展的风险因素有了新的见解,当前治疗的成功是次优的。许多风险因素,比如高血压,糖尿病,肥胖,与房颤的发展和进展有关。由于这些可能是与生活方式相关的风险因素,改变生活方式可能是减少AF相关症状和发作的解决方案。研究结果表明,某些饮食变化可以减少AF和许多AF的危险因素。人们越来越关注地中海和整个地中海,以植物为基础的饮食模式,强调吃谷物,豆类,蔬菜,水果,和坚果,同时不包括大多数或所有动物产品。因此,主要由未加工食品组成的地中海和植物性饮食的有益方面是什么?在当前的审查中,我们讨论了以饮食为基础的治疗的结果。此外,其他饮食相关治疗,由患者倡议提出,被突出显示。这些患者发起的研究包括L-谷氨酰胺和电解质作为治疗AF的选择。此外,我们强调了重视患者需求和以生活质量为中心的医学方法的重要性.正如最近的研究和患者经验所表明的那样,公民科学可以创造包容性的解决方案,导致患者赋权和房颤管理的整体方法。
    Atrial fibrillation (AF) is the most common heart rhythm disorder in the Western world. Between the years 2010 and 2019, the global prevalence of AF rose from 33.5 million to 59 million, highlighting the importance of developing equitable treatments for patients. The disease is associated with symptoms such as palpitations, dizziness, fatigue, shortness of breath, and cognitive dysfunction. In addition, AF increases the risk of developing a stroke and heart failure. Despite new insights into risk factors that can lead to the development of AF, the success of current treatments is suboptimal. Numerous risk factors, such as hypertension, diabetes, and obesity, have been associated with the development and progression of AF. As these can be lifestyle-related risk factors, lifestyle modification may be a solution to reduce AF-related symptoms as well as episodes. Research results show that certain dietary changes can reduce AF and numerous risk factors for AF. Increasing attention is being given to Mediterranean and whole, plant-based eating patterns, which emphasize eating grains, legumes, vegetables, fruits, and nuts, while excluding most-or all-animal products. Hence, what are the beneficial aspects of a Mediterranean and plant-based diet which consists mainly of unprocessed foods? In the current review, we discuss the outcomes of diet-based treatments. Moreover, other diet-related treatments, brought up by patient initiatives, are highlighted. These patient-initiated studies include L-glutamine and electrolytes as options to manage AF. Also, we highlight the emerging importance of valuing patient needs and a quality-of-life-centered approach to medicine. As indicated by recent studies and patient experiences, citizen science can create inclusive solutions that lead to patient empowerment and a holistic approach for AF management.
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  • 文章类型: Journal Article
    实现资源的可持续利用是应对未来挑战的优先事项。加的斯湾,位于欧洲南部的大西洋水域,由于其生态系统的丰富性和多样性,是一个重要的捕鱼船队的所在地。由于变量的多样性,管理这一领域是复杂的,包括社会,生态,和海洋学因素。因此,提出了实施保护策略的多学科方法。确定基于区域的管理措施的一个策略是通过使用旗舰物种,比如海马。这些象征性的动物可以帮助定义这些措施。然而,目前,关于加的斯湾海马发生的信息很少。在这项研究中,我们介绍了两种海马属的首次出现数据(H.海马和H.guttulatus)在这个区域。加的斯湾不仅被描述为欧洲大陆分布的最南端地区,但它也是海马属的重要里程碑,当一名成年人在高达101m的深度被捕获时。提出了五个基于差异化底栖栖息地的管理区。我们认为,我们的研究有可能显着改善海马的保护并对生态系统产生积极影响。
    Achieving sustainable resource use is a priority to meet future challenges. The Gulf of Cádiz, located in the Atlantic waters of southern Europe, is home to a significant fishing fleet due to the richness and diversity of its ecosystems. Managing this area is complex due to the diversity of variables, including social, ecological, and oceanographic factors. Therefore, multidisciplinary approaches are proposed for implementing conservation strategies. One strategy for defining area-based management measures is through the use of flagship species, such as seahorses. These emblematic animals can assist in defining such measures. However, there is currently scarce information on the occurrence of seahorses in the Gulf of Cádiz. In this study, we present the first occurrence data of two species of the genus Hippocampus (H. hippocampus and H. guttulatus) in this area. The Gulf of Cádiz is not only described as the southernmost region of their distribution in continental Europe, but it is also a significant landmark for the genus Hippocampus, as one adult was captured at a depth of up to 101 m. Five management areas based on differentiated benthic habitats are proposed. We believe that our study has the potential to significantly improve conservation of seahorses and induce a positive impact on the ecosystem.
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  • 文章类型: Journal Article
    Many citizen scientists are highly motivated to help address the current extinction crisis. Their work is making valuable contributions to protecting species by raising awareness, identifying species occurrences, assessing population trends, and informing direct management actions, such as captive breeding. However, clear guidance is lacking about how to use existing citizen science data sets and how to design effective citizen science programs that directly inform extinction risk assessments and resulting conservation actions based on the International Union for Conservation of Nature (IUCN) Red List criteria. This may be because of a mismatch between what citizen science can deliver to address extinction risk and the reality of what is needed to inform threatened species listing based on IUCN criteria. To overcome this problem, we examined each IUCN Red List criterion (A-E) relative to the five major types of citizen science outputs relevant to IUCN assessments (occurrence data, presence-absence observations, structured surveys, physical samples, and narratives) to recommend which outputs are most suited to use when applying the IUCN extinction risk assessment process. We explored real-world examples of citizen science projects on amphibians and fungi that have delivered valuable data and knowledge for IUCN assessments. We found that although occurrence data are routinely used in the assessment process, simply adding more observations of occurrence from citizen science information may not be as valuable as inclusion of more nuanced data types, such as presence-absence data or information on threats from structured surveys. We then explored the characteristics of citizen science projects that have already delivered valuable data to support assessments. These projects were led by recognized experts who champion and validate citizen science data, thereby giving greater confidence in its accuracy. We urge increased recognition of the value of citizen science data within the assessment process.
    Integración de la ciencia ciudadana a las evaluaciones de la Lista Roja de la UICN Resumen Existe mucha motivación entre los ciudadanos científicos para ayudar a enfrentar la actual crisis de extinción. Sus contribuciones son valiosas para la protección de las especies mediante la concientización, la detección de especies, la evaluación de las tendencias poblacionales y la información sobre acciones directas de gestión, como la cría en cautiverio. Sin embargo, faltan directrices claras sobre cómo utilizar los conjuntos de datos de ciencia ciudadana existentes y cómo diseñar programas de ciencia ciudadana eficaces que informen directamente las evaluaciones del riesgo de extinción y las acciones de conservación resultantes basadas en los criterios de la Lista Roja de la Unión Internacional para la Conservación de la Naturaleza (UICN). Esto puede deberse a un desajuste entre lo que la ciencia ciudadana puede aportar para abordar el riesgo de extinción y la realidad de lo que se necesita para fundamentar la inclusión de especies amenazadas en las listas según los criterios de la UICN. Para superar este obstáculo, analizamos cada criterio de la Lista Roja de la UICN (A‐E) en relación a los cinco tipos principales de resultados de la ciencia ciudadana relevantes para las evaluaciones de la UICN (datos de presencia, observaciones de presencia‐ausencia, encuestas estructuradas, muestras físicas y narraciones) para recomendar cuáles resultados son los más adecuados para la evaluación del riesgo de extinción de la UICN. Exploramos ejemplos reales de proyectos de ciencia ciudadana sobre anfibios y hongos que han aportado datos y conocimientos valiosos para las evaluaciones de la UICN. Descubrimos que, aunque los datos de presencia se utilizan de forma rutinaria en el proceso de evaluación, la adición de más observaciones de presencia a partir de información de ciencia ciudadana puede no ser tan valioso como la inclusión de tipos de datos más matizados, como datos de presencia‐ausencia o información sobre amenazas a partir de encuestas estructuradas. Después analizamos las características de los proyectos de ciencia ciudadana que ya han aportado datos valiosos en apoyo de las evaluaciones. Estos proyectos fueron dirigidos por expertos reconocidos que defienden y validan los datos de la ciencia ciudadana, lo que da mayor confianza en su exactitud. Instamos a un mayor reconocimiento del valor de los datos de la ciencia ciudadana en el proceso de evaluación.
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  • 文章类型: Journal Article
    背景:长期流行病学研究的随访失败是众所周知的,而且往往是巨大的。因此,结果存在偏差的风险。参与流行病学研究的动机可能会随着时间的推移而改变,但是减少后续损失的方法还没有得到很好的研究。公民科学方法使研究人员能够与研究参与者进行直接讨论,并将他们的意见和要求整合到队列管理中。
    方法:与来自德国奥格斯堡地区KORA队列的研究参与者进行了指导小组讨论。成立于40年前,以及一群独立挑选的公民。目的是着眼于长期参与的健康研究的相关方面。随后在共同创作过程中开发了双面问卷,并向500名KORA参与者和研究机构Helmholtz慕尼黑的2,400名员工提供。
    结果:讨论表明,利他动机,(即支持研究和公共卫生),个人利益(即研究考试期间的健康检查),数据保护,和外行人的研究结果的信息是至关重要的,以确保兴趣和长期参与研究。问卷的结果证实了这些方面,并表明完全的数字信息渠道可能是老年人和受教育程度较低的人的障碍。因此,时事通讯等纸质媒体仍然很重要。
    结论:研究结果揭示了队列管理和与研究参与者的长期接触。长期健康研究需要使公众和个人健康受益;该机构需要值得信赖;结果及其影响需要以广泛可理解的术语并通过正确的沟通方式传播给参与者。
    BACKGROUND: Loss to follow-up in long-term epidemiological studies is well-known and often substantial. Consequently, there is a risk of bias to the results. The motivation to take part in an epidemiological study can change over time, but the ways to minimize loss to follow-up are not well studied. The Citizen Science approach offers researchers to engage in direct discussions with study participants and to integrate their opinions and requirements into cohort management.
    METHODS: Guided group discussions were conducted with study participants from the KORA cohort in the Augsburg Region in Germany, established 40 years ago, as well as a group of independently selected citizens. The aim was to look at the relevant aspects of health studies with a focus on long-term participation. A two-sided questionnaire was developed subsequently in a co-creation process and presented to 500 KORA participants and 2,400 employees of the research facility Helmholtz Munich.
    RESULTS: The discussions revealed that altruistic motivations, (i.e. supporting research and public health), personal benefits (i.e. a health check-up during a study examination), data protection, and information about research results in layman\'s terms were crucial to ensure interest and long-term study participation. The results of the questionnaire confirmed these aspects and showed that exclusively digital information channels may be an obstacle for older and less educated people. Thus, paper-based media such as newsletters are still important.
    CONCLUSIONS: The findings shed light on cohort management and long-term engagement with study participants. A long-term health study needs to benefit public and individual health; the institution needs to be trustworthy; and the results and their impact need to be disseminated in widely understandable terms and by the right means of communication back to the participants.
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