Importance of Participant-Centricity and Trust for a Sustainable Medical Information Commons.

Drawing on a landscape analysis of existing data-sharing initiatives, in-depth interviews with expert stakeholders, and public deliberations with community advisory panels across the U.S., we describe features of the evolving medical information commons (MIC).

Earth BioGenome Project: Sequencing life for the future of life.

Increasing our understanding of Earth's biodiversity and responsibly stewarding its resources are among the most crucial scientific and social challenges of the new millennium. These challenges require fundamental new knowledge of the organization, evolution, functions, and interactions among millions of the planet's organisms. Herein, we present a perspective on the Earth BioGenome Project (EBP), a moonshot for biology that aims to sequence, catalog, and characterize the genomes of all of Earth's eukaryotic biodiversity over a period of 10 years.

Creating a data resource: what will it take to build a medical information commons?

National and international public-private partnerships, consortia, and government initiatives are underway to collect and share genomic, personal, and healthcare data on a massive scale. Ideally, these efforts will contribute to the creation of a medical information commons (MIC), a comprehensive data resource that is widely available for both research and clinical uses. Stakeholder participation is essential in clarifying goals, deepening understanding of areas of complexity, and addressing long-standing policy concerns such as privacy and security and data ownership.

The patient as consumer: empowerment or commodification? Currents in contemporary bioethics.

Discussions surrounding patient engagement and empowerment often use the terms "patient" and "consumer" interchangeably. But do the two terms hold the same meaning, or is a "patient" a passive actor in the health care arena and a "consumer" an informed, rational decision-maker? Has there been a shift in our usage of the two terms that aligns with the increasing commercialization of health care in the U.S.

Health information privacy and health information technology in the US correctional setting.

Electronic health records and electronic health information exchange are essential to improving quality of care, reducing medical errors and health disparities, and advancing the delivery of patient-centered medical care. In the US correctional setting, these goals are critical because of the high numbers of Americans affected, yet the use of health information technology is quite limited. In this article, I describe the legal environment surrounding health information sharing in corrections by focusing on 2 key federal privacy laws: the Health Insurance Portability and Accountability Act of 1996 and the federal Confidentiality of Alcohol and Drug Abuse Patient Records laws.

Health data use, stewardship, and governance: ongoing gaps and challenges: a report from AMIA's 2012 Health Policy Meeting.

Large amounts of personal health data are being collected and made available through existing and emerging technological media and tools. While use of these data has significant potential to facilitate research, improve quality of care for individuals and populations, and reduce healthcare costs, many policy-related issues must be addressed before their full value can be realized. These include the need for widely agreed-on data stewardship principles and effective approaches to reduce or eliminate data silos and protect patient privacy.

From EPSDT to EHBs: the future of pediatric coverage design under government financed health insurance.

We review the evolution of federal financing for child health care over the past 40 years. The Social Security Amendments of 1967 established the program of early and periodic screening, diagnosis and treatment (EPSDT) as a required Medicaid benefit. The EPSDT amendments directed agencies to cover "early and periodic" screening and diagnostic services to ascertain "defects" and "chronic conditions" in children, as well as health care and treatment needed to "correct or ameliorate" such defects and conditions discovered during the screening examinations.

Health information technology and the idea of informed consent.

During this early stage of HIT adoption, it is critical that we engage in discussions regarding informed consent's proper role in a health care environment in which electronic information sharing holds primary importance. This article discusses current implementation of the doctrine within health information exchange networks; the relationship between informed consent and privacy; the variety of ways that the concept is referenced in discussions of information sharing; and challenges that surround incorporation of the doctrine into the evolving HIT environment. The article concludes by reviewing the purpose behind the traditional obligation to obtain informed consent and the possibility of maintaining its relevance in the new environment.

Building an information technology infrastructure.

The widespread adoption of health information technology (HIT) has been recognized as both a necessary element of health reform and a required building block of a modern, high performing health care system.