The National COVID Cohort Collaborative (N3C): Rationale, design, infrastructure, and deployment.

OBJECTIVE: Coronavirus disease 2019 (COVID-19) poses societal challenges that require expeditious data and knowledge sharing. Though organizational clinical data are abundant, these are largely inaccessible to outside researchers. Statistical, machine learning, and causal analyses are most successful with large-scale data beyond what is available in any given organization. Here, we introduce the National COVID Cohort Collaborative (N3C), an open science community focused on analyzing patient-level data from many centers. MATERIALS AND METHODS: The Clinical and Translational Science Award Program and scientific community created N3C to overcome technical, regulatory, policy, and governance barriers to sharing and harmonizing individual-level clinical data. We developed solutions to extract, aggregate, and harmonize data across organizations and data models, and created a secure data enclave to enable efficient, transparent, and reproducible collaborative analytics. RESULTS: Organized in inclusive workstreams, we created legal agreements and governance for organizations and researchers; data extraction scripts to identify and ingest positive, negative, and possible COVID-19 cases; a data quality assurance and harmonization pipeline to create a single harmonized dataset; population of the secure data enclave with data, machine learning, and statistical analytics tools; dissemination mechanisms; and a synthetic data pilot to democratize data access. CONCLUSIONS: The N3C has demonstrated that a multisite collaborative learning health network can overcome barriers to rapidly build a scalable infrastructure incorporating multiorganizational clinical data for COVID-19 analytics. We expect this effort to save lives by enabling rapid collaboration among clinicians, researchers, and data scientists to identify treatments and specialized care and thereby reduce the immediate and long-term impacts of COVID-19.

Shaping a data-driven era in dementia care pathway through computational neurology approaches.

BACKGROUND: Dementia is caused by a variety of neurodegenerative diseases and is associated with a decline in memory and other cognitive abilities, while inflicting an enormous socioeconomic burden. The complexity of dementia and its associated comorbidities presents immense challenges for dementia research and care, particularly in clinical decision-making. MAIN BODY: Despite the lack of disease-modifying therapies, there is an increasing and urgent need to make timely and accurate clinical decisions in dementia diagnosis and prognosis to allow appropriate care and treatment. However, the dementia care pathway is currently suboptimal. We propose that through computational approaches, understanding of dementia aetiology could be improved, and dementia assessments could be more standardised, objective and efficient. In particular, we suggest that these will involve appropriate data infrastructure, the use of data-driven computational neurology approaches and the development of practical clinical decision support systems. We also discuss the technical, structural, economic, political and policy-making challenges that accompany such implementations. CONCLUSION: The data-driven era for dementia research has arrived with the potential to transform the healthcare system, creating a more efficient, transparent and personalised service for dementia.

The role of data science and machine learning in Health Professions Education: practical applications, theoretical contributions, and epistemic beliefs.

Data science is an inter-disciplinary field that uses computer-based algorithms and methods to gain insights from large and often complex datasets. Data science, which includes Artificial Intelligence techniques such as Machine Learning (ML), has been credited with the promise to transform Health Professions Education (HPE) by offering approaches to handle big (and often messy) data. To examine this promise, we conducted a critical review to explore: (1) published applications of data science and ML in HPE literature and (2) the potential role of data science and ML in shifting theoretical and epistemological perspectives in HPE research and practice. Existing data science studies in HPE are often not informed by theory, but rather oriented towards developing applications for specific problems, uses, and contexts. The most common areas currently being studied are procedural (e.g., computer-based tutoring or adaptive systems and assessment of technical skills). We found that epistemic beliefs informing the use of data science and ML in HPE poses a challenge for existing views on what constitutes objective knowledge and the role of human subjectivity for instruction and assessment. As a result, criticisms have emerged that the integration of data science in the field of HPE is in danger of becoming technically driven and narrowly focused in its approach to teaching, learning and assessment. Our findings suggest that researchers tend to formalize around the epistemological stance driven largely by traditions of a research paradigm. Future data science studies in HPE need to involve both education scientists and data scientists to ensure mutual advancements in the development of educational theory and practical applications. This may be one of the most important tasks in the integration of data science and ML in HPE research in the years to come.

Translational data analytics in exposure science and environmental health: a citizen science approach with high school students.

BACKGROUND: Translational data analytics aims to apply data analytics principles and techniques to bring about broader societal or human impact. Translational data analytics for environmental health is an emerging discipline and the objective of this study is to describe a real-world example of this emerging discipline. METHODS: We implemented a citizen-science project at a local high school. Multiple cohorts of citizen scientists, who were students, fabricated and deployed low-cost air quality sensors. A cloud-computing solution provided real-time air quality data for risk screening purposes, data analytics and curricular activities. RESULTS: The citizen-science project engaged with 14 high school students over a four-year period that is continuing to this day. The project led to the development of a website that displayed sensor-based measurements in local neighborhoods and a GitHub-like repository for open source code and instructions. Preliminary results showed a reasonable comparison between sensor-based and EPA land-based federal reference monitor data for CO and NOx. CONCLUSIONS: Initial sensor-based data collection efforts showed reasonable agreement with land-based federal reference monitors but more work needs to be done to validate these results. Lessons learned were: 1) the need for sustained funding because citizen science-based project timelines are a function of community needs/capacity and building interdisciplinary rapport in academic settings and 2) the need for a dedicated staff to manage academic-community relationships.

The Role of the ACR Data Science Institute in Advancing Health Equity in Radiology.

Commercially available artificial intelligence (AI) algorithms outside of health care have been shown to be susceptible to ethnic, gender, and social bias, which has important implications in the development of AI algorithms in health care and the radiologic sciences. To prevent the introduction bias in health care AI, the physician community should work with developers and regulators to develop pathways to ensure that algorithms marketed for widespread clinical practice are safe, effective, and free of unintended bias. The ACR Data Science Institute has developed structured AI use cases with data elements that allow the development of standardized data sets for AI testing and training across multiple institutions to promote the availability of diverse data for algorithm development. Additionally, the ACR Data Science Institute validation and monitoring services, ACR Certify-AI and ACR Assess-AI, incorporate standards to mitigate algorithm bias and promote health equity. In addition to promoting diversity, the ACR should promote and advocate for payment models for AI that afford access to AI tools for all of our patients regardless of socioeconomic status or the inherent resources of their health systems.

The Impact of Perioperative Data Science in Hospital Knowledge Management.

Conservative practices, such as manual registry have limited scope regarding preoperative, intraoperative and postoperative decision making, knowledge discovery, analytical techniques and knowledge integration into patient care. To maximize quality and value, perioperative care is changing through new technological developments. In this context, knowledge management practices will enable future transformation and enhancements in healthcare services. By performing a data science and knowledge management research in the perioperative department at Hospital Dr. Nélio Mendonça between 2013 and 2015, this paper describes its principal results. This study showed perioperative decision-making improvement by integrating data science tools on the perioperative electronic system (PES). Before the PES implementation only 1,2% of the nurses registered the preoperative visit and after 87,6% registered it. Regarding the patient features it was possible to assess anxiety and pain levels. A future conceptual model for perioperative decision support systems grounded on data science should be considered as a knowledge management tool.

People-powered data collaboratives: fueling data science with the health-related experiences of individuals.

The creation of people-driven data collaboratives, with governance structures that enable participants to have a meaningful voice in issues surrounding the use of their own data, is a novel strategy to harness our growing capacity to develop and maintain immense data assets from the real health experiences of individuals.