If laws governing data access are to evolve, a key consideration will be the ability to demonstrate data stewardship, that is, the existence of mechanisms for responsibly acquiring, storing, safeguarding, and using data. 2005 Rosenbaum and Painter 2010 ), health care providers and health plans tend to fight against broad health information transparency ( Beckerman et al. Despite the fact that shielding information from patients or failing to make use of information carries liability risks of its own ( Institute of Medicine 2001 Rosenbaum et al. Indeed, a study of more than 500 HIPAA Privacy Rule cases found that one of the most common types of cases involved providers who resisted releasing health data to their own patients out of liability concerns ( Rosenbaum et al. Naturally, opponents also are focused on their own interests, given the potentially deleterious impact of uncontrolled data access on their liability under a host of civil and criminal laws, as well as on their competitive market position. Opponents raise a host of concerns, citing patient privacy, the confidential nature of the patient/professional relationship, and health information security. Advocates of greater data access insist on the need for data at the patient, provider, and health care system level, in order to advance understanding of quality, efficiency, safety, and health ( McGlynn et al. A central policy question in the coming years is whether the growth of stewardship capabilities, coupled with increased expectation of evidence-informed health care providers and consumers, will combine to lessen or eliminate these barriers.Īn intense struggle over health information access has been a hallmark of the health care system for decades. This article focuses on the second assumption, examining both the concept of data stewardship as well as the considerable legal barriers to data access and use that can exist, even when stewardship is present. Health services research rests on the twin assumptions that good evidence can be created from health and health care data on patients, providers, and health care systems, and that these data will be available. One possible answer may lie in defining the public interest in certain data uses, tying provider participation in federal health programs to the release of all-payer data to recognized data stewardship entities for aggregation and management, and enabling such entities to foster and enable the creation of knowledge through research. As the concept of health information data stewardship advances in a technology-enabled environment, the question is whether legal barriers to data access and use will begin to give way. Data governance is the process by which responsibilities of stewardship are conceptualized and carried out. The concept of a data steward is intended to convey a fiduciary (or trust) level of responsibility toward the data. Reflecting the values of fair information practice, data stewardship denotes an approach to the management of data, particularly data that can identify individuals. ![]() Data stewardship is a concept with deep roots in the science and practice of data collection, sharing, and analysis. Models exist for the creation of data-sharing arrangements that promote proper use of information in a safe and secure environment and with attention to ethical standards. The expanded use of health information-an inevitable step in an information age-is widely considered be essential to health system reform. health policy is engaged in a struggle over access to health information, in particular, the conditions under which information should be accessible for research when appropriate privacy protections and security safeguards are in place.
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