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The gold standard for diagnosing sleep disorders is polysomnography, which generates extensive data about biophysical changes occurring during sleep. We developed the National Sleep Research Resource (NSRR), a comprehensive system for sharing sleep data. The NSRR embodies elements of a data commons aimed at accelerating research to address critical questions about the impact of sleep disorders on important health outcomes.

Historically, patients have held a passive role within healthcare, seeking consultation from and following the directions of providers and their care teams. However, changes in culture, education, and technology are making it possible for patients to proactively develop and implement technologies and approaches for health management and quality of life enhancement-to act as patient informaticians. This perspective reviews the societal shifts facilitating the evolution of patient informaticians as discrete actors [...]

To develop and test a visual analytics tool to help clinicians identify systematic and clinically meaningful patterns in patient-generated data (PGD) while decreasing perceived information overload.

Sepsis is a serious medical condition that can lead to organ dysfunction and death. Research shows that each hour delay in antibiotic administration increases mortality. The Surviving Sepsis Campaign Bundles created standards to assist in the timely treatment of patients with suspected sepsis to improve outcomes and reduce mortality.

Obtaining patient permissions for research contact and for surplus tissue use as part of routine clinical practice can improve research participation. This study aims to investigate the difference in patient permissions for use of surplus tissues, and for direct contact for research, using 2 different methods of solicitation.

The Accrual to Clinical Trials (ACT) network is a federated network of sites from the National Clinical and Translational Science Award (CTSA) Consortium that has been created to significantly increase participant accrual to multi-site clinical trials. The ACT network represents an unprecedented collaboration among diverse CTSA sites. The network has created governance and regulatory frameworks and a common data model to harmonize electronic health record (EHR) data, and deployed a [...]

Patient-centered symptom assessment and management tools allow patients to perform self-assessments and engage in self-symptom management. Efficacious tools exist for reducing symptom distress; however, little is known about feature-specific use.

We introduce data assimilation as a computational method that uses machine learning to combine data with human knowledge in the form of mechanistic models in order to forecast future states, to impute missing data from the past by smoothing, and to infer measurable and unmeasurable quantities that represent clinically and scientifically important phenotypes. We demonstrate the advantages it affords in the context of type 2 diabetes by showing how data [...]