The impact of electronic health record–integrated patient-generated health data on clinician burnout

Patient-generated health data (PGHD), such as patient-reported outcomes and mobile health data, have been increasingly used to improve health care delivery and outcomes. Integrating PGHD into electronic health records (EHRs) further expands the capacities to monitor patients’ health status without requiring office visits or hospitalizations. By reviewing and discussing PGHD with patients remotely, clinicians could address the clinical issues efficiently outside of clinical settings. However, EHR-integrated PGHD may create a burden for clinicians, leading to burnout. This study aims to investigate how interactions with EHR-integrated PGHD may result in clinician burnout. We identify the potential contributing factors to clinician burnout using a modified FITT (Fit between Individuals, Task and Technology) framework. We found that technostress, time pressure, and workflow-related issues need to be addressed to accelerate the integration of PGHD into clinical care. The roles of artificial intelligence, algorithm-based clinical decision support, visualization format, human-computer interaction mechanism, workflow optimization, and financial reimbursement in reducing burnout are highlighted.     

The iTHRIV Commons: a cross-institution information and health research data sharing architecture and web application

ObjectiveThe integrated Translational Health Research Institute of Virginia (iTHRIV) aims to develop an information architecture to support data workflows throughout the research lifecycle for cross-state teams of translational researchers.Materials and MethodsThe iTHRIV Commons is a cross-state harmonized infrastructure supporting resource discovery, targeted consultations, and research data workflows. As the front end to the iTHRIV Commons, the iTHRIV Research Concierge Portal supports federated login, personalized views, and secure interactions with objects in the ITHRIV Commons federation. The canonical use-case for the iTHRIV Commons involves an authenticated user connected to their respective high-security institutional network, accessing the iTHRIV Research Concierge Portal web application on their browser, and interfacing with multi-component iTHRIV Commons Landing Services installed behind the firewall at each participating institution.ResultsThe iTHRIV Commons provides a technical framework, including both hardware and software resources located in the cloud and across partner institutions, that establishes standard representation of research objects, and applies local data governance rules to enable access to resources from a variety of stakeholders, both contributing and consuming.DiscussionThe launch of the Commons API service at partner sites and the addition of a public view of nonrestricted objects will remove barriers to data access for cross-state research teams while supporting compliance and the secure use of data.ConclusionsThe secure architecture, distributed APIs, and harmonized metadata of the iTHRIV Commons provide a methodology for compliant information and data sharing that can advance research productivity at Hub sites across the CTSA network.     

Editor's Choice: A methodology for a minimum data set for rare diseases to support national centers of excellence for healthcare and research

Background Although rare disease patients make up approximately 6–8% of all patients in Europe, it is often difficult to find the necessary expertise for diagnosis and care and the patient numbers needed for rare disease research. The second French National Plan for Rare Diseases highlighted the necessity for better care coordination and epidemiology for rare diseases. A clinical data standard for normalization and exchange of rare disease patient data was proposed. The original methodology used to build the French national minimum data set (F-MDS-RD) common to the 131 expert rare disease centers is presented.Methods To encourage consensus at a national level for homogeneous data collection at the point of care for rare disease patients, we first identified four national expert groups. We reviewed the scientific literature for rare disease common data elements (CDEs) in order to build the first version of the F-MDS-RD. The French rare disease expert centers validated the data elements (DEs). The resulting F-MDS-RD was reviewed and approved by the National Plan Strategic Committee. It was then represented in an HL7 electronic format to maximize interoperability with electronic health records.Results The F-MDS-RD is composed of 58 DEs in six categories: patient, family history, encounter, condition, medication, and questionnaire. It is HL7 compatible and can use various ontologies for diagnosis or sign encoding. The F-MDS-RD was aligned with other CDE initiatives for rare diseases, thus facilitating potential interconnections between rare disease registries.Conclusions The French F-MDS-RD was defined through national consensus. It can foster better care coordination and facilitate determining rare disease patients’ eligibility for research studies, trials, or cohorts. Since other countries will need to develop their own standards for rare disease data collection, they might benefit from the methods presented here.     

构建以电子健康档案为核心的全民健康信息化保障体系

目的构建以电子健康档案为核心的全民健康信息化保障体表。方法1）以生命周期为主钱，构建关键健康事件核心数据结构，进行数据建模，以XSD方式实现；2）构建地市一级健康档案数据中心；3）利用Webservice等技术，实现相关健康事件数据自动上传至数据中心并整合；4）基于数据中心的相关诊疗规范的制定。结果1）地市一级的健康档案数据中心的数据结构及存储模型的实现。2）实现数据自动整合与自然积累的架构体系。结论依托信息技术，实现以健康档案为核心、以生命周期为主线、以数据中心为载体、以地市一级为单位的全民健康信息化保障体系。在此基础上追行诊疗规范等的制定，提高全民健康保障水平。     

Synergies between centralized and federated approaches to data quality: a report from the national COVID cohort collaborative

ObjectiveIn response to COVID-19, the informatics community united to aggregate as much clinical data as possible to characterize this new disease and reduce its impact through collaborative analytics. The National COVID Cohort Collaborative (N3C) is now the largest publicly available HIPAA limited dataset in US history with over 6.4 million patients and is a testament to a partnership of over 100 organizations.Materials and MethodsWe developed a pipeline for ingesting, harmonizing, and centralizing data from 56 contributing data partners using 4 federated Common Data Models. N3C data quality (DQ) review involves both automated and manual procedures. In the process, several DQ heuristics were discovered in our centralized context, both within the pipeline and during downstream project-based analysis. Feedback to the sites led to many local and centralized DQ improvements.ResultsBeyond well-recognized DQ findings, we discovered 15 heuristics relating to source Common Data Model conformance, demographics, COVID tests, conditions, encounters, measurements, observations, coding completeness, and fitness for use. Of 56 sites, 37 sites (66%) demonstrated issues through these heuristics. These 37 sites demonstrated improvement after receiving feedback.DiscussionWe encountered site-to-site differences in DQ which would have been challenging to discover using federated checks alone. We have demonstrated that centralized DQ benchmarking reveals unique opportunities for DQ improvement that will support improved research analytics locally and in aggregate.ConclusionBy combining rapid, continual assessment of DQ with a large volume of multisite data, it is possible to support more nuanced scientific questions with the scale and rigor that they require.     

Assessing the practice of data quality evaluation in a national clinical data research network through a systematic scoping review in the era of real-world data

ObjectiveTo synthesize data quality (DQ) dimensions and assessment methods of real-world data, especially electronic health records, through a systematic scoping review and to assess the practice of DQ assessment in the national Patient-centered Clinical Research Network (PCORnet).Materials and MethodsWe started with 3 widely cited DQ literature—2 reviews from Chan et al (2010) and Weiskopf et al (2013a) and 1 DQ framework from Kahn et al (2016)—and expanded our review systematically to cover relevant articles published up to February 2020. We extracted DQ dimensions and assessment methods from these studies, mapped their relationships, and organized a synthesized summarization of existing DQ dimensions and assessment methods. We reviewed the data checks employed by the PCORnet and mapped them to the synthesized DQ dimensions and methods.ResultsWe analyzed a total of 3 reviews, 20 DQ frameworks, and 226 DQ studies and extracted 14 DQ dimensions and 10 assessment methods. We found that completeness, concordance, and correctness/accuracy were commonly assessed. Element presence, validity check, and conformance were commonly used DQ assessment methods and were the main focuses of the PCORnet data checks.DiscussionDefinitions of DQ dimensions and methods were not consistent in the literature, and the DQ assessment practice was not evenly distributed (eg, usability and ease-of-use were rarely discussed). Challenges in DQ assessments, given the complex and heterogeneous nature of real-world data, exist.ConclusionThe practice of DQ assessment is still limited in scope. Future work is warranted to generate understandable, executable, and reusable DQ measures.     

Behavioral health providers' beliefs about health information exchange: a statewide survey

Objective

To assess behavioral health providers'' beliefs about the benefits and barriers of health information exchange (HIE).

Methods

Survey of a total of 2010 behavioral health providers in a Midwestern state (33% response rate), with questions based on previously reported open-ended beliefs elicitation interviews.

Results

Factor analysis resulted in four groupings: beliefs that HIE would improve care and communication, add cost and time burdens, present access and vulnerability concerns, and impact workflow and control (positively and negatively). A regression model including all four factors parsimoniously predicted attitudes toward HIE. Providers clustered into two groups based on their beliefs: a majority (67%) were positive about the impact of HIE, and the remainder (33%) were negative. There were some professional/demographic differences between the two clusters of providers.

Discussion

Most behavioral health providers are supportive of HIE; however, their adoption and use of it may continue to lag behind that of medical providers due to perceived cost and time burdens and concerns about access to and vulnerability of information.     

From web search to healthcare utilization: privacy-sensitive studies from mobile data

Objective

We explore relationships between health information seeking activities and engagement with healthcare professionals via a privacy-sensitive analysis of geo-tagged data from mobile devices.

Materials and methods

We analyze logs of mobile interaction data stripped of individually identifiable information and location data. The data analyzed consist of time-stamped search queries and distances to medical care centers. We examine search activity that precedes the observation of salient evidence of healthcare utilization (EHU) (ie, data suggesting that the searcher is using healthcare resources), in our case taken as queries occurring at or near medical facilities.

Results

We show that the time between symptom searches and observation of salient evidence of seeking healthcare utilization depends on the acuity of symptoms. We construct statistical models that make predictions of forthcoming EHU based on observations about the current search session, prior medical search activities, and prior EHU. The predictive accuracy of the models varies (65%–90%) depending on the features used and the timeframe of the analysis, which we explore via a sensitivity analysis.

Discussion

We provide a privacy-sensitive analysis that can be used to generate insights about the pursuit of health information and healthcare. The findings demonstrate how large-scale studies of mobile devices can provide insights on how concerns about symptomatology lead to the pursuit of professional care.

Conclusion

We present new methods for the analysis of mobile logs and describe a study that provides evidence about how people transition from mobile searches on symptoms and diseases to the pursuit of healthcare in the world.     

Information blocking remains prevalent at the start of 21st Century Cures Act: results from a survey of health information exchange organizations

ObjectiveRecent policy making aims to prevent health systems, lectronic health record (EHR) vendors, and others from blocking the electronic sharing of patient data necessary for clinical care. We sought to assess the prevalence of information blocking prior to enforcement of these rules.Materials and MethodsWe conducted a national survey of health information exchange organizations (HIEs) to measure the prevalence of information blocking behaviors observed by these third-party entities. Eighty-nine of 106 HIEs (84%) meeting the inclusion criteria responded.ResultsThe majority (55%) of HIEs reported that EHR vendors at least sometimes engage in information blocking, while 30% of HIEs reported the same for health systems. The most common type of information blocking behavior EHR vendors engaged in was setting unreasonably high prices, which 42% of HIEs reported routinely observing. The most common type of information blocking behavior health systems engaged in was refusing to share information, which 14% of HIEs reported routinely observing. Reported levels of vendor information blocking was correlated with regional competition among vendors and information blocking was concentrated in some geographic regions.DiscussionOur findings are consistent with early reports, revealing persistently high levels of information blocking and important variation by actor, type of behavior, and geography. These trends reflect the observations and experiences of HIEs and their potential biases. Nevertheless, these data serve as a baseline against which to measure the impact of new regulations and to inform policy makers about the most common types of information blocking behaviors.ConclusionEnforcement aimed at reducing information blocking should consider variation in prevalence and how to most effectively target efforts.     

Utility of registries for post-marketing evaluation of medicines. A survey of Swedish health care quality registries from a regulatory perspective

Aim: The aim of this study was to describe content and procedures in some selected Swedish health care quality registries (QRs) of relevance to regulatory decision-making.

Methods: A workshop was organized with participation of seven Swedish QRs which subsequently answered a questionnaire regarding registry content on drug treatments and outcomes. Patient populations, coverage, data handling and quality control, as well as legal and ethical aspects are presented. Scientific publications from the QRs are used as a complementary measure of quality and scientific relevance.

Results: The registries under study collect clinical data of high relevance to regulatory and health technology agencies. Five out of seven registries provide information on the drug of interest. When applying external quality criteria, we found a high degree of fulfillment, although information on medication was not sufficient to answer all questions of regulatory interest. A notable strength is the option for linkage to the Prescribed Drug Registry and to information on education and socioeconomic status. Data on drugs used during hospitalization were also collected to some extent. Outcome measures collected resemble those used in relevant clinical trials. All registries collected patient-reported outcome measures. The number of publications from the registries was substantial, with studies of appropriate design, including randomized registry trials.

Conclusions: Quality registries may provide a valuable source of post-marketing data on drug effectiveness, safety, and cost-effectiveness. Closer collaboration between registries and regulators to improve quality and usefulness of registry data could benefit both regulatory utility and value for health care providers.     

The US Food and Drug Administration Sentinel System: a national resource for a learning health system

The US Food and Drug Administration (FDA) created the Sentinel System in response to a requirement in the FDA Amendments Act of 2007 that the agency establish a system for monitoring risks associated with drug and biologic products using data from disparate sources. The Sentinel System has completed hundreds of analyses, including many that have directly informed regulatory decisions. The Sentinel System also was designed to support a national infrastructure for a learning health system. Sentinel governance and guiding principles were designed to facilitate Sentinel’s role as a national resource. The Sentinel System infrastructure now supports multiple non-FDA projects for stakeholders ranging from regulated industry to other federal agencies, international regulators, and academics. The Sentinel System is a working example of a learning health system that is expanding with the potential to create a global learning health system that can support medical product safety assessments and other research.     

体检人群食物不耐受与高脂血症的相关性

目的 观察体检人群中食物不耐受与高脂血症的关系.方法 选取2008年8月至2009年6月解放军总医院健康医学中心第一次进行食物不耐受项目检测且数据完整的健康体检者11 434名进行调查分析,应用非条件Logistic回归模型进行多因素分析,统计软件由SPSS 13.0完成.结果 食物不耐受阳性组6 897名,食物不耐受阴性组4 537名,食物不耐受率为60.32％.两组年龄、性别、吸烟、体质指数、总胆固醇、甘油三酯和高密度脂蛋白胆固醇差异均有统计学差意义(均P＜0.05).多元回归分析显示,食物不耐受与年龄、性别、体质指数显著相关,与高脂血症负相关;其中年龄因素,与≤40岁组比较,41～ 50岁、51 ～ 60岁及＞60岁组的OR值分别为1.125(95％ CI:1.021～1.238)、1.350(95％ CI:1.207～1.510)和1.564(95％ CI:1.279～1.912);性别因素,与男性相比,女性的OR值为1.528(95％ CI:1.382～1.689);体重因素,与正常体重者比较,体重过轻者的OR值为1.720(95％ CI:1.147～2.580);而血脂因素,与非高脂血者比较,高脂血症者OR值为0.879(95％CI:0.810 ～0.955).结论 该体检人群中食物不耐受与高脂血症可能存在一定程度的联系,其作用机制有待深入分析.     

A tale of two applications: lessons learned from national LMIC COVID applications

Mobile health (mHealth) technologies in low- and middle-income countries (LMICs) have received increased attention for the significant potential benefits they can bring to underserved populations. As smartphones are becoming increasingly accessible, many stakeholders in the mHealth space have begun exploring smartphone applications as a means to impact individuals living within LMICs. With the COVID-19 pandemic straining healthcare systems around the world, many governments in LMICs turned to use smartphone applications to help support and manage their pandemic responses. By analyzing national COVID-19 applications created and launched by the Indian and Vietnamese governments, we highlight effective application functions and strategies, summarizing best practices for future LMIC application development.     

SOCIAL SURVEY ON INTEGRATIVE MEDICINE——Situation of Integrative Medicine in China： Results from a National Survey in 2004

Integrative medicine （ IM）, usually called integrated traditional and Western medicine in China, which came into being in the 1950s as a new form of medicine, although is now developing quickly, little is known about its status and existing problems. So a national survey in China was conducted through questionnaire in 2004 by Chinese Association of Integrative Medicine with the support of State Administration of Traditional Chinese Medicine （SATCM）. The results show that, of all the medical professionals investigated in this survey, 91.21% and 93.52% respondents respectively favored IM as the best diagnostic and therapeutic method. Of all the patients who once went through TCM, Western medicine （WM） and IM therapies, 68.85%, 65.45% and 71.2% respondents respectively most appreciated IM, IM hospitals and IM therapeutic treatments. Most of the 6 595 respondents held that the optimal scientific research strategy in TOM should be integrating modern medical research method （ n = 2 380） or modern scientific method （ n = 2 920）. However, many hospitals exposed the problems in the aspects of governmental supports and funding supports, human resources, and domestic or international academic activities. These results indicated that IM is the patients＇ social needs and doctors＇ aspiration in China. For further development of IM, the enhancement of scientific research construction and assistance by policies and finance from the government and other institutions are urgently needed in China.     

基于社区移动医疗的心律失常筛查方案真实世界研究

背景心律失常发生率高且严重威胁人类健康,但由于其症状的隐匿性和发作的不可预测性,传统的心电设备很难捕捉到发作时心电图,无法得以确诊和对因治疗。在社区医生指导下,居民居家自行应用单导联可穿戴心电设备采集数据并实时上传可以明显提升心律失常的诊断率,但目前国内外相关研究大多缺乏真实世界数据的支撑。目的 探讨基于社区移动医疗的3种心律失常筛查方案的真实世界研究。方法 选取2020年9月至2021年9月银川市所属社区纳入的435例居民作为受试者,根据性别分为男性组(177例)、女性组(258例);根据年龄分为青年组(135例)、中年组(200例)、老年组(100例);根据受教育程度分为小学组(77例)、中学组(165例)、大学组(193例);根据既往有无明确心血管病病史分为有病史组(233例)和无病史组(202例)。应用单导联可穿戴远程心电设备,分别按以下方案采集心电数据：间断采集3次24 h心电数据(方案1);采集1次24 h及至少3次1 h心电数据(方案2);连续采集1次72 h及至少1次1 h心电数据(方案3)。由受试者自主自愿选择筛查方案中的任意1种,不论有无症状均自主选择时间,自行佩戴...     

Knowledge and attitudes of healthcare professionals and the impact on willingness to donate organs: a tertiary hospital survey

INTRODUCTIONHealthcare professionals (HCPs) working in critical care areas play an important role in the organ donation (OD) process. We studied HCPs’ own willingness to be organ donors and its association with sociodemographic factors as well as their knowledge and attitudes about OD and transplantation.METHODSA cross-sectional survey of HCPs working in four critical care units in a major transplant centre in Malaysia was undertaken using a validated structured questionnaire. Responses were analysed using multivariable analysis with willingness to donate as the dependent variable.RESULTSOf the 412 respondents (response rate 98.1%), the majority were nurses (60.4%), Malay (71.1%) and female (77.2%). Overall, 68.0% were willing to donate. The independent predictors of willingness to donate were profession (p < 0.001) and the Hindu religion (p = 0.001). Ethnicity (p = 0.003), religious belief (p < 0.001), knowledge (p = 0.016), belief in brain death (p = 0.018) and confidence in transplantation (p < 0.001) also independently correlated with willingness to donate, while attitudes to OD did not. Of those willing to donate, only 37.3% were carrying a donor card and only 63.1% had informed their family of their intention to donate.CONCLUSIONAlthough willingness to donate was higher in critical care HCPs than HCPs in general, significant knowledge gaps as well as certain beliefs and perceptions that could pose a barrier to OD were identified in this group. Measures to improve OD rates in Malaysia should include targeted educational programmes for HCPs working in critical care areas.     

Encoding laboratory testing data: case studies of the national implementation of HHS requirements and related standards in five laboratories

ObjectiveAssess the effectiveness of providing Logical Observation Identifiers Names and Codes (LOINC®)-to-In Vitro Diagnostic (LIVD) coding specification, required by the United States Department of Health and Human Services for SARS-CoV-2 reporting, in medical center laboratories and utilize findings to inform future United States Food and Drug Administration policy on the use of real-world evidence in regulatory decisions.Materials and MethodsWe compared gaps and similarities between diagnostic test manufacturers’ recommended LOINC® codes and the LOINC® codes used in medical center laboratories for the same tests.ResultsFive medical centers and three test manufacturers extracted data from laboratory information systems (LIS) for prioritized tests of interest. The data submission ranged from 74 to 532 LOINC® codes per site. Three test manufacturers submitted 15 LIVD catalogs representing 26 distinct devices, 6956 tests, and 686 LOINC® codes. We identified mismatches in how medical centers use LOINC® to encode laboratory tests compared to how test manufacturers encode the same laboratory tests. Of 331 tests available in the LIVD files, 136 (41%) were represented by a mismatched LOINC® code by the medical centers (chi-square 45.0, 4 df, P < .0001).DiscussionThe five medical centers and three test manufacturers vary in how they organize, categorize, and store LIS catalog information. This variation impacts data quality and interoperability.ConclusionThe results of the study indicate that providing the LIVD mappings was not sufficient to support laboratory data interoperability. National implementation of LIVD and further efforts to promote laboratory interoperability will require a more comprehensive effort and continuing evaluation and quality control.     

Key principles for a national clinical decision support knowledge sharing framework: synthesis of insights from leading subject matter experts

Objective

To identify key principles for establishing a national clinical decision support (CDS) knowledge sharing framework.

Materials and methods

As part of an initiative by the US Office of the National Coordinator for Health IT (ONC) to establish a framework for national CDS knowledge sharing, key stakeholders were identified. Stakeholders'' viewpoints were obtained through surveys and in-depth interviews, and findings and relevant insights were summarized. Based on these insights, key principles were formulated for establishing a national CDS knowledge sharing framework.

Results

Nineteen key stakeholders were recruited, including six executives from electronic health record system vendors, seven executives from knowledge content producers, three executives from healthcare provider organizations, and three additional experts in clinical informatics. Based on these stakeholders'' insights, five key principles were identified for effectively sharing CDS knowledge nationally. These principles are (1) prioritize and support the creation and maintenance of a national CDS knowledge sharing framework; (2) facilitate the development of high-value content and tooling, preferably in an open-source manner; (3) accelerate the development or licensing of required, pragmatic standards; (4) acknowledge and address medicolegal liability concerns; and (5) establish a self-sustaining business model.

Discussion

Based on the principles identified, a roadmap for national CDS knowledge sharing was developed through the ONC''s Advancing CDS initiative.

Conclusion

The study findings may serve as a useful guide for ongoing activities by the ONC and others to establish a national framework for sharing CDS knowledge and improving clinical care.