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Designing patient-centered consumer health informatics (CHI) applications requires understanding and creating alignment with patients' and their family members' health-related activities, referred to here as 'patient work'. A patient work approach to CHI draws on medical social science and human factors engineering models and simultaneously attends to patients, their family members, activities, and context. A patient work approach extends existing approaches to CHI design that are responsive to patients' biomedical realities [...]

Reminders are often part of interventions to help older people adhere to complicated medication regimes. Computer-generated (synthetic) speech is ideal for tailoring reminders to different medication regimes. Since synthetic speech may be less intelligible than human speech, in particular under difficult listening conditions, we assessed how well older people can recall synthetic speech reminders for medications. 44 participants aged 50-80 with no cognitive impairment recalled reminders for one or four [...]

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 [...]

To conduct a series of focus groups with primary care physicians to determine the optimal format of a shortened, focused systematic review.

Increasing the adoption of electronic health records (EHRs) with integrated clinical decision support (CDS) is a key initiative of the current US healthcare administration. High over-ride rates of CDS alerts strongly limit these potential benefits. As a result, EHR designers aspire to improve alert design to achieve better acceptance rates. In this study, we evaluated drug-drug interaction (DDI) alerts generated in EHRs and compared them for compliance with human factors [...]

Administration of human subject research is complex, involving not only the institutional review board but also many other regulatory and compliance entities within a research enterprise. Its efficiency has a direct and substantial impact on the conduct and management of clinical research. In this paper, we report on the Clinical Research Administration (CLARA) platform developed at the University of Arkansas for Medical Sciences. CLARA is a comprehensive web-based system that [...]

While the secondary use of medical data has gained attention, its adoption has been constrained due to protection of patient privacy. Making medical data secure by de-identification can be problematic, especially when the data concerns rare diseases. We require rigorous security management measures.

The Secretary of Health and Human Services (HHS) acting through the Food and Drug Administration (FDA), and in collaboration with the Federal Communications Commission (FCC) and Office of the National Coordinator for Health IT (ONC) was tasked with delivering a report on an appropriate, risk-based regulatory framework for health information technology (IT). An expert stakeholder group was established under the auspices of the Health IT Policy Committee to help provide [...]

This paper describes Health Level 7 (HL7) V.3 Care Transfer, Care Record Query, and Care Record messages. This is the core of the Care Provision Domain in the HL7 standard which became normative at the end of 2012 and is an American National Standards Institute (ANSI)-approved HL7 standard.