A scalable, secure, and interoperable platform for deep data-driven health management.

The large amount of biomedical data derived from wearable sensors, electronic health records, and molecular profiling (e.g., genomics data) is rapidly transforming our healthcare systems. The increasing scale and scope of biomedical data not only is generating enormous opportunities for improving health outcomes but also raises new challenges ranging from data acquisition and storage to data analysis and utilization. To meet these challenges, we developed the Personal Health Dashboard (PHD), which utilizes state-of-the-art security and scalability technologies to provide an end-to-end solution for big biomedical data analytics. The PHD platform is an open-source software framework that can be easily configured and deployed to any big data health project to store, organize, and process complex biomedical data sets, support real-time data analysis at both the individual level and the cohort level, and ensure participant privacy at every step. In addition to presenting the system, we illustrate the use of the PHD framework for large-scale applications in emerging multi-omics disease studies, such as collecting and visualization of diverse data types (wearable, clinical, omics) at a personal level, investigation of insulin resistance, and an infrastructure for the detection of presymptomatic COVID-19.

The Clinical Information Systems Response to the COVID-19 Pandemic.

OBJECTIVE: The year 2020 was predominated by the coronavirus disease 2019 (COVID-19) pandemic. The objective of this article is to review the areas in which clinical information systems (CIS) can be and have been utilized to support and enhance the response of healthcare systems to pandemics, focusing on COVID-19. METHODS: PubMed/MEDLINE, Google Scholar, the tables of contents of major informatics journals, and the bibliographies of articles were searched for studies pertaining to CIS, pandemics, and COVID-19 through October 2020. The most informative and detailed studies were highlighted, while many others were referenced. RESULTS: CIS were heavily relied upon by health systems and governmental agencies worldwide in response to COVID-19. Technology-based screening tools were developed to assist rapid case identification and appropriate triaging. Clinical care was supported by utilizing the electronic health record (EHR) to onboard frontline providers to new protocols, offer clinical decision support, and improve systems for diagnostic testing. Telehealth became the most rapidly adopted medical trend in recent history and an essential strategy for allowing safe and effective access to medical care. Artificial intelligence and machine learning algorithms were developed to enhance screening, diagnostic imaging, and predictive analytics - though evidence of improved outcomes remains limited. Geographic information systems and big data enabled real-time dashboards vital for epidemic monitoring, hospital preparedness strategies, and health policy decision making. Digital contact tracing systems were implemented to assist a labor-intensive task with the aim of curbing transmission. Large scale data sharing, effective health information exchange, and interoperability of EHRs remain challenges for the informatics community with immense clinical and academic potential. CIS must be used in combination with engaged stakeholders and operational change management in order to meaningfully improve patient outcomes. CONCLUSION: Managing a pandemic requires widespread, timely, and effective distribution of reliable information. In the past year, CIS and informaticists made prominent and influential contributions in the global response to the COVID-19 pandemic.

What do users think of the UK's three COVID-19 contact-tracing apps? A comparative analysis.

OBJECTIVES: Our goal was to gain insights into the user reviews of the three COVID-19 contact-tracing mobile apps, developed for the different regions of the UK: 'NHS COVID-19' for England and Wales, 'StopCOVID NI' for Northern Ireland and 'Protect Scotland' for Scotland. Our two research questions are (1) what are the users' experience and satisfaction levels with the three apps? and (2) what are the main issues (problems) that users have reported about the apps? METHODS: We assess the popularity of the apps and end users' perceptions based on user reviews in app stores. We conduct three types of analysis (data mining, sentiment analysis and topic modelling) to derive insights from the combined set of 25 583 user reviews of the aforementioned three apps (submitted by users until the end of 2020). RESULTS: Results show that end users have been generally dissatisfied with the apps under study, except the Scottish app. Some of the major issues that users have reported are high battery drainage and doubts on whether apps are really working. DISCUSSION: Towards the end of 2020, the much-awaited COVID-19 vaccines started to be available, but still, analysing the users' feedback and technical issues of these apps, in retrospective, is valuable to learn the right lessons to be ready for similar circumstances in future. CONCLUSION: Our results show that more work is needed by the stakeholders behind the apps (eg, apps' software engineering teams, public-health experts and decision makers) to improve the software quality and, as a result, the public adoption of these apps. For example, they should be designed to be as simple as possible to operate (need for usability).

Automated production of research data marts from a canonical fast healthcare interoperability resource data repository: applications to COVID-19 research.

OBJECTIVE: The rapidly evolving COVID-19 pandemic has created a need for timely data from the healthcare systems for research. To meet this need, several large new data consortia have been developed that require frequent updating and sharing of electronic health record (EHR) data in different common data models (CDMs) to create multi-institutional databases for research. Traditionally, each CDM has had a custom pipeline for extract, transform, and load operations for production and incremental updates of data feeds to the networks from raw EHR data. However, the demands of COVID-19 research for timely data are far higher, and the requirements for updating faster than previous collaborative research using national data networks have increased. New approaches need to be developed to address these demands. METHODS: In this article, we describe the use of the Fast Healthcare Interoperability Resource (FHIR) data model as a canonical data model and the automated transformation of clinical data to the Patient-Centered Outcomes Research Network (PCORnet) and Observational Medical Outcomes Partnership (OMOP) CDMs for data sharing and research collaboration on COVID-19. RESULTS: FHIR data resources could be transformed to operational PCORnet and OMOP CDMs with minimal production delays through a combination of real-time and postprocessing steps, leveraging the FHIR data subscription feature. CONCLUSIONS: The approach leverages evolving standards for the availability of EHR data developed to facilitate data exchange under the 21st Century Cures Act and could greatly enhance the availability of standardized datasets for research.

Health information technology and digital innovation for national learning health and care systems.

Health information technology can support the development of national learning health and care systems, which can be defined as health and care systems that continuously use data-enabled infrastructure to support policy and planning, public health, and personalisation of care. The COVID-19 pandemic has offered an opportunity to assess how well equipped the UK is to leverage health information technology and apply the principles of a national learning health and care system in response to a major public health shock. With the experience acquired during the pandemic, each country within the UK should now re-evaluate their digital health and care strategies. After leaving the EU, UK countries now need to decide to what extent they wish to engage with European efforts to promote interoperability between electronic health records. Major priorities for strengthening health information technology in the UK include achieving the optimal balance between top-down and bottom-up implementation, improving usability and interoperability, developing capacity for handling, processing, and analysing data, addressing privacy and security concerns, and encouraging digital inclusivity. Current and future opportunities include integrating electronic health records across health and care providers, investing in health data science research, generating real-world data, developing artificial intelligence and robotics, and facilitating public-private partnerships. Many ethical challenges and unintended consequences of implementation of health information technology exist. To address these, there is a need to develop regulatory frameworks for the development, management, and procurement of artificial intelligence and health information technology systems, create public-private partnerships, and ethically and safely apply artificial intelligence in the National Health Service.

Informatics for public health and health system collaboration: Applications for the control of the current COVID-19 pandemic and the next one.

Public health faces unprecedented challenges in its efforts to control COVID-19 through a national vaccination campaign. Addressing these challenges will require fundamental changes to public health data systems. For example, of the core data systems for immunization campaigns is the immunization information system (IIS); however, IISs were designed for tracking the vaccinated, not finding the patients who are high risk and need to be vaccinated. Health systems have this data in their electronic health records (EHR) systems and often have a greater capacity for outreach. Clearly, a partnership is needed. However, successful collaborations will require public health to change from its historical hierarchical information supply chain model to an ecosystem model with a peer-to-peer exchange with population health providers. Examples of the types of informatics innovations necessary to support such an ecosystem include a national patient identifier, population-level data exchange for immunization data, and computable electronic quality measures. Rather than think of these components individually, a comprehensive approach to rapidly adaptable tools for collaboration is needed.

How to Improve Information Technology to Support Healthcare to Address the COVID-19 Pandemic: an International Survey with Health Informatics Experts.

OBJECTIVES: To identify the ways in which healthcare information and communication technologies can be improved to address the challenges raised by the COVID-19 pandemic. METHODS: The study population included health informatics experts who had been involved with the planning, development and deployment of healthcare information and communication technologies in healthcare settings in response to the challenges presented by the COVID-19 pandemic. Data were collected via an online survey. A non-probability convenience sampling strategy was employed. Data were analyzed with content analysis. RESULTS: A total of 65 participants from 16 countries responded to the conducted survey. The four major themes regarding recommended improvements identified from the content analysis included: improved technology availability, improved interoperability, intuitive user interfaces and adoption of standards of care. Respondents also identified several key healthcare information and communication technologies that can help to provide better healthcare to patients during the COVID-19 pandemic, including telehealth, advanced software, electronic health records, remote work technologies (e.g., remote desktop computer access), and clinical decision support tools. CONCLUSIONS: Our results help to identify several important healthcare information and communication technologies, recommended by health informatics experts, which can help to provide better care to patients during the COVID-19 pandemic. The results also highlight the need for improved interoperability, intuitive user interfaces and advocating the adoption of standards of care.

Suitability of databases in the Asia-Pacific for collaborative monitoring of vaccine safety.

INTRODUCTION: Information regarding availability of electronic healthcare databases in the Asia-Pacific region is critical for planning vaccine safety assessments particularly, as COVID-19 vaccines are introduced. This study aimed to identify data sources in the region, potentially suitable for vaccine safety surveillance. This manuscript is endorsed by the International Society for Pharmacoepidemiology (ISPE). METHODS: Nineteen countries targeted for database reporting were identified using published country lists and review articles. Surveillance capacity was assessed using two surveys: a 9-item introductory survey and a 51-item full survey. Survey questions related to database characteristics, covariate and health outcome variables, vaccine exposure characteristics, access and governance, and dataset linkage capability. Other questions collated research/regulatory applications of the data and local publications detailing database use for research. RESULTS: Eleven databases containing vaccine-specific information were identified across 8 countries. Databases were largely national in coverage (8/11, 73%), encompassed all ages (9/11, 82%) with population size from 1.4 to 52 million persons. Vaccine exposure information varied particularly for standardized vaccine codes (5/11, 46%), brand (7/11, 64%) and manufacturer (5/11, 46%). Outcome data were integrated with vaccine data in 6 (55%) databases and available via linkage in 5 (46%) databases. Data approval processes varied, impacting on timeliness of data access. CONCLUSIONS: Variation in vaccine data availability, complexities in data access including, governance and data release approval procedures, together with requirement for data linkage for outcome information, all contribute to the challenges in building a distributed network for vaccine safety assessment in the Asia-Pacific and globally. Common data models (CDMs) may help expedite vaccine safety research across the region.

Following data as it crosses borders during the COVID-19 pandemic.

Data change the game in terms of how we respond to pandemics. Global data on disease trajectories and the effectiveness and economic impact of different social distancing measures are essential to facilitate effective local responses to pandemics. COVID-19 data flowing across geographic borders are extremely useful to public health professionals for many purposes such as accelerating the pharmaceutical development pipeline, and for making vital decisions about intensive care unit rooms, where to build temporary hospitals, or where to boost supplies of personal protection equipment, ventilators, or diagnostic tests. Sharing data enables quicker dissemination and validation of pharmaceutical innovations, as well as improved knowledge of what prevention and mitigation measures work. Even if physical borders around the globe are closed, it is crucial that data continues to transparently flow across borders to enable a data economy to thrive, which will promote global public health through global cooperation and solidarity.

The influence of the learning health system to address the COVID-19 pandemic: An examination of early literature.

INTRODUCTION: The COVID-19 pandemic has demanded immediate response from healthcare systems around the world. The learning health system (LHS) was created with rapid uptake of the newest evidence in mind, making it essential in the face of a pandemic. The goal of this review is to gain knowledge on the initial impact of the LHS on addressing the COVID-19 pandemic. METHODS: PubMed, Scopus and the Duke University library search tool were used to identify current literature regarding the intersection of the LHS and the COIVD-19 pandemic. Articles were reviewed for their purpose, findings and relation to each component of the LHS. RESULTS: Twelve articles were included in the review. All stages of the LHS were addressed from this sample. Most articles addressed some component of interoperability. Articles that interpreted data unique to COVID-19 and demonstrated specific tools and interventions were least common. CONCLUSIONS: Gaps in interoperability are well known and unlikely to be solved in the coming months. Collaboration between health systems, researchers, governments and professional societies is needed to support a robust LHS which grants the ability to rapidly adapt to global emergencies.

Centers for Disease Control and Prevention 2019 novel coronavirus disease (COVID-19) information management: addressing national health-care and public health needs for standardized data definitions and codified vocabulary for data exchange.

OBJECTIVE: The 2019 novel coronavirus disease (COVID-19) outbreak progressed rapidly from a public health (PH) emergency of international concern (World Health Organization [WHO], 30 January 2020) to a pandemic (WHO, 11 March 2020). The declaration of a national emergency in the United States (13 March 2020) necessitated the addition and modification of terminology related to COVID-19 and development of the disease's case definition. During this period, the Centers for Disease Control and Prevention (CDC) and standard development organizations released guidance on data standards for reporting COVID-19 clinical encounters, laboratory results, cause-of-death certifications, and other surveillance processes for COVID-19 PH emergency operations. The CDC COVID-19 Information Management Repository was created to address the need for PH and health-care stakeholders at local and national levels to easily obtain access to comprehensive and up-to-date information management resources. MATERIALS AND METHODS: We introduce the clinical and health-care informatics community to the CDC COVID-19 Information Management Repository: a new, national COVID-19 information management tool. We provide a description of COVID-19 informatics resources, including data requirements for COVID-19 data reporting. RESULTS: We demonstrate the CDC COVID-19 Information Management Repository's categorization and management of critical COVID-19 informatics documentation and standards. We also describe COVID-19 data exchange standards, forms, and specifications. CONCLUSIONS: This information will be valuable to clinical and PH informaticians, epidemiologists, data analysts, standards developers and implementers, and information technology managers involved in the development of COVID-19 situational awareness and response reporting and analytics.