patient-generated health data

患者生成的健康数据
  • 文章类型: Journal Article
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  • 文章类型: Journal Article
    近年来,Fitbit等可穿戴设备的采用彻底改变了个人跟踪和监控个人活动数据的方式。这些设备为个人的身体活动水平提供了有价值的视野,睡眠模式,和整体健康指标。将这些数据集成到医疗保健信息系统中可以在个性化医疗保健交付和改善患者结果方面提供显著的益处。本文探讨了使用openEHR参考模型在医疗保健信息学中对Fitbit生成的个人活动数据进行协同集成,作为基于健康信息学标准的患者生成的健康数据(PGHD)集成的实际案例研究,作为表示和交换的框架电子健康记录(EHR)。通过openEHR和FHIR标准模型协同整合Fitbit生成的个人活动数据,还涵盖了高级分析和人口健康管理的方式。通过链接和分析来自各种来源的数据,包括传感器和可穿戴设备,医疗机构可以识别趋势,模式,以及可以指导人口健康战略的见解,预防性护理举措,和个性化的治疗计划,除了帮助医生进行后续护理。
    In recent years, the adoption of wearable gadgets such as Fitbit has revolutionized the way individuals track and monitor their personal activity data. These devices provide valuable in-sights into an individual\'s physical activity levels, sleep patterns, and overall health metrics. Integrating this data into healthcare informatics systems can offer significant benefits in terms of personalized healthcare delivery and improved patient outcomes. This paper explores the synergistic integration of Fitbit-generated personal activity data using the openEHR Reference Model in healthcare informatics as a practical case study in patient-generated health data (PGHD) integration based on health informatics standards as a framework for the representation and exchange of Electronic Health Records (EHRs). The synergistic integration of Fitbit-generated personal activity data through openEHR and FHIR standards models also covers the way for advanced analytics and population health management. By linking and analyzing data from various sources, including sensors and wearable devices, healthcare organizations can identify trends, patterns, and insights that can guide population health strategies, preventive care initiatives, and personalized treatment plans, in addition to aiding physicians in follow-up care.
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  • 文章类型: Journal Article
    丰富学习健康系统(LHS)的一种方法是利用可穿戴技术的生命体征和数据。血氧,心率,呼吸率,和可穿戴设备收集的其他数据(如睡眠和运动模式)可用于监测和预测健康状况。这些数据已经在收集中,可以通过多种方式用于改善医疗保健。我们的方法将是与HL7FHIR的健康数据互操作性(用于不同系统之间的数据交换),openEHR(存储与软件分离但连接到本体的可研究数据,外部术语和代码集),并维护数据的语义。OpenEHR是在建模过程和临床决策中具有重要作用的标准。生活方式医学的六大支柱可以是改变患者如何看待他们的日常决定的第一次尝试。影响他们健康的中长期演变。我们的目标是开发基于共同制作的个人健康记录(CoPHR)的第一阶段,该记录建立在本地LLM之上,通过HL7FHIR实现健康数据的互操作。openEHR,OHDSI和可以吸收外部证据并产生临床和个人决策支持的术语,当与许多其他患者结合时,可以提供或确认证据。
    One approach to enriching the Learning Health System (LHS) is leveraging vital signs and data from wearable technologies. Blood oxygen, heart rate, respiration rates, and other data collected by wearables (like sleep and exercise patterns) can be used to monitor and predict health conditions. This data is already being collected and could be used to improve healthcare in several ways. Our approach will be health data interoperability with HL7 FHIR (for data exchange between different systems), openEHR (to store researchable data separated from software but connected to ontologies, external terminologies and code sets) and maintain the semantics of data. OpenEHR is a standard that has an important role in modelling processes and clinical decisions. The six pillars of Lifestyle Medicine can be a first attempt to change how patients see their daily decisions, affecting the mid to long-term evolution of their health. Our objective is to develop the first stage of the LHS based on a co-produced personal health recording (CoPHR) built on top of a local LLM that interoperates health data through HL7 FHIR, openEHR, OHDSI and terminologies that can ingest external evidence and produces clinical and personal decision support and, when combined with many other patients, can produce or confirm evidence.
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  • 文章类型: Journal Article
    背景:COVID-19大流行影响了人们如何获得医疗服务,以及他们如何管理2型糖尿病(T2D)等慢性病。社交媒体论坛提供了定性数据的来源,以了解如何从患者的角度进行适应。
    目的:我们的目的是通过进行范围界定的文献综述,了解在大流行早期,T2D患者的求医行为和态度是如何受到影响的。第二个目标是将范围审查的结果与流行的社交媒体平台Reddit上显示的结果进行比较。
    方法:2021年进行了范围审查。纳入标准为T2D人群,研究以病人为中心,研究目标以健康行为为中心,疾病管理,或COVID-19大流行期间的心理健康结果。排除标准是患有其他非传染性疾病的人群,检查COVID-19与T2D的共病,T2D患者中COVID-19的临床治疗,患有T2D的人群中COVID-19的遗传表达,灰色文学,或者不是用英语发表的研究。通过与其他作者一起审查不确定性,可以减轻偏差。从研究中提取的数据被分为主题类别。根据我们的目标,这些类别反映了本研究的结果。下载了2020年3月至2021年3月初与T2D相关的Reddit论坛的数据,如果在大流行的背景下发布了帖子,则使用支持向量机进行分类。进行了潜在狄利克雷分配主题建模,以收集COVID-19大流行特有的讨论主题。
    结果:2020年2月至9月共进行了26项研究,由13,673名参与者组成。包括在这篇范围界定文献综述中。这些研究是定性的,主要依赖于来自调查或问卷的定性数据。从文献综述中发现的主题是“血糖控制较差,\"\"增加不健康食品的消费,“\”体力活动减少,\"\"无法访问医疗预约,\"和\"增加压力和焦虑。“Reddit论坛潜在的Dirichlet分配主题建模的结果是”应对不良的心理健康,\"\"接触医生和药物并控制血糖,\“\”在大流行期间改变饮食习惯,压力对血糖水平的影响,\"\"改变就业和保险状况,“和”COVID并发症的风险。\"
    结论:Reddit论坛评估的讨论主题提供了大流行对T2D患者影响的整体观点,这些发现与文献综述的结果相当。这项研究的局限性在于只有一名文献综述者,但是当存在不确定性时,咨询作者可以减轻偏见。Reddit表格的定性分析可以补充传统的T2D患者行为的定性研究。
    BACKGROUND: The COVID-19 pandemic impacted how people accessed health services and likely how they managed chronic conditions such as type 2 diabetes (T2D). Social media forums present a source of qualitative data to understand how adaptation might have occurred from the perspective of the patient.
    OBJECTIVE: Our objective is to understand how the care-seeking behaviors and attitudes of people living with T2D were impacted during the early part of the pandemic by conducting a scoping literature review. A secondary objective is to compare the findings of the scoping review to those presented on a popular social media platform Reddit.
    METHODS: A scoping review was conducted in 2021. Inclusion criteria were population with T2D, studies are patient-centered, and study objectives are centered around health behaviors, disease management, or mental health outcomes during the COVID-19 pandemic. Exclusion criteria were populations with other noncommunicable diseases, examining COVID-19 as a comorbidity to T2D, clinical treatments for COVID-19 among people living with T2D, genetic expressions of COVID-19 among people living with T2D, gray literature, or studies not published in English. Bias was mitigated by reviewing uncertainties with other authors. Data extracted from the studies were classified into thematic categories. These categories reflect the findings of this study as per our objective. Data from the Reddit forums related to T2D from March 2020 to early March 2021 were downloaded, and support vector machines were used to classify if a post was published in the context of the pandemic. Latent Dirichlet allocation topic modeling was performed to gather topics of discussion specific to the COVID-19 pandemic.
    RESULTS: A total of 26 studies conducted between February and September 2020, consisting of 13,673 participants, were included in this scoping literature review. The studies were qualitative and relied mostly on qualitative data from surveys or questionnaires. Themes found from the literature review were \"poorer glycemic control,\" \"increased consumption of unhealthy foods,\" \"decreased physical activity,\" \"inability to access medical appointments,\" and \"increased stress and anxiety.\" Findings from latent Dirichlet allocation topic modeling of Reddit forums were \"Coping With Poor Mental Health,\" \"Accessing Doctor & Medications and Controlling Blood Glucose,\" \"Changing Food Habits During Pandemic,\" \"Impact of Stress on Blood Glucose Levels,\" \"Changing Status of Employment & Insurance,\" and \"Risk of COVID Complications.\"
    CONCLUSIONS: Topics of discussion gauged from the Reddit forums provide a holistic perspective of the impact of the pandemic on people living with T2D, which were found to be comparable to the findings of the literature review. The study was limited by only having 1 reviewer for the literature review, but biases were mitigated by consulting authors when there were uncertainties. Qualitative analysis of Reddit forms can supplement traditional qualitative studies of the behaviors of people living with T2D.
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  • 文章类型: Journal Article
    本范围审查旨在识别和综合与家庭环境中患有癌症的老年人中患者生成的健康数据(PGHD)相关的文献。在通过六个数据库搜索提取的1090篇文章中,53人被选中。研究发表于2007年至2022年,生成PGHD的设备类型包括研究级和消费级可穿戴设备。PGHD被评估为身体活动,生命体征,和睡眠。PGHD利用率进行了分类:1)识别,监测,review,和分析(100%);2)反馈和信息报告(32.1%);3)动机(26.4%);和4)教育和指导(17.0%)。我们的研究表明,来自癌症老年人的各种PGHD主要是被动收集的,与医疗保健提供者的互动使用有限。这些结果可能为医疗保健提供者提供有价值的见解,以了解PGHD在老年癌症护理中的潜在应用。
    This scoping review aimed to identify and synthesize the literature related to patient-generated health data (PGHD) among older adults with cancer in home setting. Of the 1,090 articles extracted through six databases searches, 53 were selected. Studies were published from 2007 to 2022 and the types of devices to generate PGHD included research-grade and consumer-grade wearable devices. PGHD was assessed for physical activity, vital signs, and sleep. PGHD utilization was categorized: 1) identification, monitoring, review, and analysis (100%); 2) feedback and information report (32.1%); 3) motivation (26.4%); and 4) education and coaching (17.0%). Our study reveals that various PGHDs from older adults with cancer are mainly collected passively, with limited use for interaction with healthcare providers. These results may provide valuable insights for healthcare providers into potential PGHD applications in geriatric cancer care.
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  • 文章类型: Journal Article
    背景:社区卫生中心(CHC)患者的慢性病患病率过高,并且在获得可能支持这些疾病管理的技术方面存在障碍。一种这样的技术包括用于远程患者监测(RPM)的工具,在COVID-19大流行期间,其使用激增。
    目的:本研究的目的是评估CHC在COVID-19大流行期间如何实施RPM计划。
    方法:这项回顾性案例研究使用了一种混合方法解释性序贯设计来评估CHC在COVID-19大流行期间对一套RPM工具的实施。分析使用电子健康记录提取的健康结果数据以及与CHC的工作人员和参与RPM计划的患者的半结构化访谈。
    结果:CHC招募了147名高血压患者RPM计划。RPM使用6个月后,平均收缩压(BP)降低13.4mmHg,平均舒张压降低6.4mmHg,与高血压控制(BP<140/90mmHg)从33.3%增加到81.5%相对应。相当大的努力致力于支持这个项目,通过慢性病管理的组织优先次序得到加强,以及一位支持项目实施的临床医生。注意到实施RPM计划的障碍是有限的初始培训,缺乏持续的支持,以及与RPM装置技术相关的复杂性。
    结论:虽然RPM技术有望解决慢性病管理问题,成功的RPM计划需要在实施支持和技术援助方面进行大量投资。
    BACKGROUND: Community health center (CHC) patients experience a disproportionately high prevalence of chronic conditions and barriers to accessing technologies that might support the management of these conditions. One such technology includes tools used for remote patient monitoring (RPM), the use of which surged during the COVID-19 pandemic.
    OBJECTIVE: The aim of this study was to assess how a CHC implemented an RPM program during the COVID-19 pandemic.
    METHODS: This retrospective case study used a mixed methods explanatory sequential design to evaluate a CHC\'s implementation of a suite of RPM tools during the COVID-19 pandemic. Analyses used electronic health record-extracted health outcomes data and semistructured interviews with the CHC\'s staff and patients participating in the RPM program.
    RESULTS: The CHC enrolled 147 patients in a hypertension RPM program. After 6 months of RPM use, mean systolic blood pressure (BP) was 13.4 mm Hg lower and mean diastolic BP 6.4 mm Hg lower, corresponding with an increase in hypertension control (BP<140/90 mm Hg) from 33.3% of patients to 81.5%. Considerable effort was dedicated to standing up the program, reinforced by organizational prioritization of chronic disease management, and by a clinician who championed program implementation. Noted barriers to implementation of the RPM program were limited initial training, lack of sustained support, and complexities related to the RPM device technology.
    CONCLUSIONS: While RPM technology holds promise for addressing chronic disease management, successful RPM program requires substantial investment in implementation support and technical assistance.
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  • 文章类型: Journal Article
    目标:使用工作流执行模型来突出以患者为中心的临床决策支持策略(PCCDS)的新考虑因素,进程,程序,技术,以及支持新工作流所需的专业知识。
    方法:要生成和完善模型,我们使用(1)有针对性的文献综述;(2)与6名外部PCCDS专家进行的关键信息访谈;(3)基于作者经验的模型改进;(4)由26名成员组成的指导委员会对模型进行验证.
    结论:我们确定了7个主要问题,这些问题为医疗保健系统带来了重大挑战和机遇,研究人员,管理员,以及健康的IT和应用程序开发人员。克服这些挑战为新的或修改的政策提供了机会,进程,程序,技术,和专业知识:(1)确保患者生成的健康数据(PGHD),包括患者报告的结果(PRO),被记录在案,reviewed,并由训练有素的临床医生管理,在访问之间和正常工作时间之后。(2)教育患者使用连接的医疗器械,处理技术问题。(3)促进PGHD的收集和合并,PROs,患者偏好,并将健康的社会决定因素纳入现有的电子健康记录。(4)对从设备接收到的错误数据进行故障排除。(5)开发显示纵向患者报告数据的仪表板。(6)提供报销以支持新的护理模式。(7)支持患者参与远程设备。
    结论:几项新政策,进程,技术,和专业知识需要确保PCCDS的安全和有效实施和使用。随着我们获得更多实施和使用PCCDS的经验,我们应该能够开始意识到医疗保健中以患者为中心的运动对患者健康的长期积极影响。
    OBJECTIVE: To use workflow execution models to highlight new considerations for patient-centered clinical decision support policies (PC CDS), processes, procedures, technology, and expertise required to support new workflows.
    METHODS: To generate and refine models, we used (1) targeted literature reviews; (2) key informant interviews with 6 external PC CDS experts; (3) model refinement based on authors\' experience; and (4) validation of the models by a 26-member steering committee.
    CONCLUSIONS: We identified 7 major issues that provide significant challenges and opportunities for healthcare systems, researchers, administrators, and health IT and app developers. Overcoming these challenges presents opportunities for new or modified policies, processes, procedures, technology, and expertise to: (1) Ensure patient-generated health data (PGHD), including patient-reported outcomes (PROs), are documented, reviewed, and managed by appropriately trained clinicians, between visits and after regular working hours. (2) Educate patients to use connected medical devices and handle technical issues. (3) Facilitate collection and incorporation of PGHD, PROs, patient preferences, and social determinants of health into existing electronic health records. (4) Troubleshoot erroneous data received from devices. (5) Develop dashboards to display longitudinal patient-reported data. (6) Provide reimbursement to support new models of care. (7) Support patient engagement with remote devices.
    CONCLUSIONS: Several new policies, processes, technologies, and expertise are required to ensure safe and effective implementation and use of PC CDS. As we gain more experience implementing and working with PC CDS, we should be able to begin realizing the long-term positive impact on patient health that the patient-centered movement in healthcare promises.
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  • 文章类型: Systematic Review
    背景:移动健康(mHealth)使用移动技术来促进健康并帮助疾病管理。尽管在临床环境中使用的mHealth解决方案通常是医疗级设备,智能手机和活动跟踪器等消费级设备的被动和主动感知功能有可能弥合有关患者行为的信息差距,环境,生活方式,和其他无处不在的数据。个人越来越多地采用mHealth解决方案,这有助于收集患者生成的健康数据(PGHD)。医疗保健专业人员(HCP)可能会使用这些数据来支持慢性病的护理。然而,在临床背景下,对使用来自消费级mHealth解决方案的PGHD的HPC的现实生活体验的研究有限。
    目的:本系统综述旨在分析现有文献,以确定HCP如何在临床环境中使用来自消费级移动设备的PGHD。目标是确定HCP使用的PGHD类型,他们使用它们的健康状况,并了解他们使用它们的动机。
    方法:系统的文献综述是综合前人研究的主要研究方法。通过全面的健康搜索确定了合格的研究,生物医学,和计算机科学数据库,并进行了互补的手搜索。搜索策略是根据与PGHD相关的关键主题迭代构建的,HCP,和移动技术。筛选过程包括2个阶段。使用预定义的形式进行数据提取。使用描述性和叙述性综合方法对提取的数据进行总结。
    结果:该综述包括16项研究。这些研究从2015年到2021年,大部分发表在2019年或更晚。研究表明,HCP一直在通过各种渠道审查PGHD,包括解决方案门户和患者设备。关于患者行为的PGHD似乎对HCP特别有用。我们的研究结果表明,PGHD更常用于HCP治疗与生活方式相关的疾病。比如糖尿病和肥胖症。医生是最常报告的PGHD用户,参与80%以上的研究。
    结论:通过mHealth解决方案收集PGHD已证明对患者有益,也可以支持HCP。PGHD对于治疗与生活方式相关的疾病特别有用,比如糖尿病,心血管疾病,肥胖,或者在高度不确定性的领域,比如不孕症。将PGHD集成到临床护理中带来了与隐私和可访问性相关的挑战。一些HCP已经发现,尽管来自消费设备的PGHD可能并不完美或完全准确,他们的感知临床价值超过了没有数据的选择.尽管他们的感知价值,我们的研究结果表明,它们在临床实践中的使用仍然很少。
    RR2-10.2196/39389。
    BACKGROUND: Mobile health (mHealth) uses mobile technologies to promote wellness and help disease management. Although mHealth solutions used in the clinical setting have typically been medical-grade devices, passive and active sensing capabilities of consumer-grade devices like smartphones and activity trackers have the potential to bridge information gaps regarding patients\' behaviors, environment, lifestyle, and other ubiquitous data. Individuals are increasingly adopting mHealth solutions, which facilitate the collection of patient-generated health data (PGHD). Health care professionals (HCPs) could potentially use these data to support care of chronic conditions. However, there is limited research on real-life experiences of HPCs using PGHD from consumer-grade mHealth solutions in the clinical context.
    OBJECTIVE: This systematic review aims to analyze existing literature to identify how HCPs have used PGHD from consumer-grade mobile devices in the clinical setting. The objectives are to determine the types of PGHD used by HCPs, in which health conditions they use them, and to understand the motivations behind their willingness to use them.
    METHODS: A systematic literature review was the main research method to synthesize prior research. Eligible studies were identified through comprehensive searches in health, biomedicine, and computer science databases, and a complementary hand search was performed. The search strategy was constructed iteratively based on key topics related to PGHD, HCPs, and mobile technologies. The screening process involved 2 stages. Data extraction was performed using a predefined form. The extracted data were summarized using a combination of descriptive and narrative syntheses.
    RESULTS: The review included 16 studies. The studies spanned from 2015 to 2021, with a majority published in 2019 or later. Studies showed that HCPs have been reviewing PGHD through various channels, including solutions portals and patients\' devices. PGHD about patients\' behavior seem particularly useful for HCPs. Our findings suggest that PGHD are more commonly used by HCPs to treat conditions related to lifestyle, such as diabetes and obesity. Physicians were the most frequently reported users of PGHD, participating in more than 80% of the studies.
    CONCLUSIONS: PGHD collection through mHealth solutions has proven beneficial for patients and can also support HCPs. PGHD have been particularly useful to treat conditions related to lifestyle, such as diabetes, cardiovascular diseases, and obesity, or in domains with high levels of uncertainty, such as infertility. Integrating PGHD into clinical care poses challenges related to privacy and accessibility. Some HCPs have identified that though PGHD from consumer devices might not be perfect or completely accurate, their perceived clinical value outweighs the alternative of having no data. Despite their perceived value, our findings reveal their use in clinical practice is still scarce.
    UNASSIGNED: RR2-10.2196/39389.
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  • 文章类型: Journal Article
    远程医疗或远程护理已被广泛用于提供医疗保健支持,并取得了巨大的发展和积极成果,包括低收入和中等收入国家(LMICs)。社交网络平台,作为一个易于使用的工具,为用户提供了在传统临床环境之外收集数据的简化手段。微信,许多国家最受欢迎的社交网络平台之一,已经被用来进行远程医疗,并托管了大量患者生成的健康数据(PGHD),包括文本,声音,images,和视频。其特点是方便,迅速,和跨平台支持丰富和简化医疗保健提供和沟通,解决大流行期间传统临床护理的一些弱点。本研究旨在系统地总结如何利用微信平台来促进医疗保健服务,以及它如何改善获得医疗保健的机会。
    利用Levesque的医疗保健可及性模型,这项研究探讨了微信在5个领域的影响:接近性,可接受性,可用性和住宿,负担能力,和适当性。
    这些发现突出了微信的多样化功能,从远程健康咨询和远程患者监测到无缝PGHD交换。微信与健康跟踪应用程序的集成,支持远程健康咨询,在大流行期间,调查能力对疾病管理做出了重大贡献。
    微信的实践和影响可能为利用社交网络平台促进医疗保健提供提供经验。微信PGHD的利用为共享决策开辟了途径,促使需要进一步研究,以建立报告指南和政策,解决健康研究中与社交网络平台相关的隐私和道德问题。
    UNASSIGNED: Telehealth or remote care has been widely leveraged to provide health care support and has achieved tremendous developments and positive results, including in low- and middle-income countries (LMICs). Social networking platform, as an easy-to-use tool, has provided users with simplified means to collect data outside of the traditional clinical environment. WeChat, one of the most popular social networking platforms in many countries, has been leveraged to conduct telehealth and hosted a vast amount of patient-generated health data (PGHD), including text, voices, images, and videos. Its characteristics of convenience, promptness, and cross-platform support enrich and simplify health care delivery and communication, addressing some weaknesses of traditional clinical care during the pandemic. This study aims to systematically summarize how WeChat platform has been leveraged to facilitate health care delivery and how it improves the access to health care.
    UNASSIGNED: Utilizing Levesque\'s health care accessibility model, the study explores WeChat\'s impact across 5 domains: Approachability, Acceptability, Availability and accommodation, Affordability, and Appropriateness.
    UNASSIGNED: The findings highlight WeChat\'s diverse functionalities, ranging from telehealth consultations and remote patient monitoring to seamless PGHD exchange. WeChat\'s integration with health tracking apps, support for telehealth consultations, and survey capabilities contribute significantly to disease management during the pandemic.
    UNASSIGNED: The practices and implications from WeChat may provide experiences to utilize social networking platforms to facilitate health care delivery. The utilization of WeChat PGHD opens avenues for shared decision-making, prompting the need for further research to establish reporting guidelines and policies addressing privacy and ethical concerns associated with social networking platforms in health research.
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  • 文章类型: Journal Article
    癌症疗法使儿童癌症幸存者容易受到各种治疗相关的晚期影响,这导致了更高的症状负担,慢性健康状况(CHC),过早死亡。在诊所就诊之间定期监测症状有助于及时进行医疗咨询和干预,以改善生活质量(QOL)。健康共享研究旨在利用mHealth收集患者生成的健康数据(PGHD;日常症状,瞬时身体健康状态),并制定针对幸存者的风险预测评分,以减轻不良健康结果,包括生活质量差和急诊室入院。这些个性化的风险评分将被集成到基于医院的电子健康记录(EHR)系统中,以促进临床医生与幸存者的沟通,以便及时管理后期影响。
    这项前瞻性研究将从圣裘德终身队列研究中招募600名儿童癌症成年幸存者。数据收集包括通过智能手机收集的20种日常症状,客观身体健康数据(体力活动强度,睡眠性能,和生物特征数据,包括静息心率,心率变异性,氧饱和度,和身体压力)通过可穿戴活动监测器,患者报告的结果(生活质量差,计划外的医疗保健利用)通过智能手机,和临床确定的结果(体能表现缺陷,CHCs的发作/恶化)在生存诊所评估。参与者将在基线时在诊所完成健康调查和身体/功能评估,2)报告每日症状,戴上活动监视器,在家测量血压超过4个月,和3)完成健康调查和身体/功能评估在诊所从基线1年和2年。从EHR提取的社会人口统计学和临床数据将包括在分析中。我们将邀请20名癌症幸存者研究合适的格式,以在仪表板上显示预测的风险信息,并邀请10名临床医生为不良健康结果提出基于证据的风险管理策略。
    机器和统计学习将用于预测建模。这两种方法都可以处理大量的预测因子,包括日常症状/其他PGHD的纵向模式,以及癌症治疗和社会人口统计学。
    个性化风险预测评分和提供者与幸存者之间增加的沟通有可能通过识别不良事件的早期临床表现来改善生存护理和结局。
    UNASSIGNED: Cancer therapies predispose childhood cancer survivors to various treatment-related late effects, which contribute to a higher symptom burden, chronic health conditions (CHCs), and premature mortality. Regular monitoring of symptoms between clinic visits is useful for timely medical consultation and interventions that can improve quality of life (QOL). The Health Share Study aims to utilize mHealth to collect patient-generated health data (PGHD; daily symptoms, momentary physical health status) and develop survivor-specific risk prediction scores for mitigating adverse health outcomes including poor QOL and emergency room admissions. These personalized risk scores will be integrated into the hospital-based electronic health record (EHR) system to facilitate clinician communications with survivors for timely management of late effects.
    UNASSIGNED: This prospective study will recruit 600 adult survivors of childhood cancer from the St. Jude Lifetime Cohort study. Data collection include 20 daily symptoms via a smartphone, objective physical health data (physical activity intensity, sleep performance, and biometric data including resting heart rate, heart rate variability, oxygen saturation, and physical stress) via a wearable activity monitor, patient-reported outcomes (poor QOL, unplanned healthcare utilization) via a smartphone, and clinically ascertained outcomes (physical performance deficits, onset of/worsening CHCs) assessed in the survivorship clinic. Participants will complete health surveys and physical/functional assessments in the clinic at baseline, 2) report daily symptoms, wear an activity monitor, measure blood pressure at home over 4 months, and 3) complete health surveys and physical/functional assessments in the clinic 1 and 2 years from the baseline. Socio-demographic and clinical data abstracted from the EHR will be included in the analysis. We will invite 20 cancer survivors to investigate suitable formats to display predicted risk information on a dashboard and 10 clinicians to suggest evidence-based risk management strategies for adverse health outcomes.
    UNASSIGNED: Machine and statistical learning will be used in prediction modeling. Both approaches can handle a large number of predictors, including longitudinal patterns of daily symptoms/other PGHD, along with cancer treatments and socio-demographics.
    UNASSIGNED: The individualized risk prediction scores and added communications between providers and survivors have the potential to improve survivorship care and outcomes by identifying early clinical presentations of adverse events.
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