The Building Blocks of Interoperability. A Multisite Analysis of Patient Demographic Attributes Available for Matching.

BackgroundPatient matching is a key barrier to achieving interoperability. Patient demographic elements must be consistently collected over time and region to be valuable elements for patient matching.ObjectivesWe sought to determine what patient demographic attributes are collected at multiple institutions in the United States and see how their availability changes over time and across clinical sites.MethodsWe compiled a list of 36 demographic elements that stakeholders previously identified as essential patient demographic attributes that should be collected for the purpose of linking patient records. We studied a convenience sample of 9 health care systems from geographically distinct sites around the country. We identified changes in the availability of individual patient demographic attributes over time and across clinical sites.ResultsSeveral attributes were consistently available over the study period (2005-2014) including last name (99.96%), first name (99.95%), date of birth (98.82%), gender/sex (99.73%), postal code (94.71%), and full street address (94.65%). Other attributes changed significantly from 2005-2014: Social security number (SSN) availability declined from 83.3% to 50.44% (p<0.0001). Email address availability increased from 8.94% up to 54% availability (p<0.0001). Work phone number increased from 20.61% to 52.33% (p<0.0001).ConclusionsOverall, first name, last name, date of birth, gender/sex and address were widely collected across institutional sites and over time. Availability of emerging attributes such as email and phone numbers are increasing while SSN use is declining. Understanding the relative availability of patient attributes can inform strategies for optimal matching in healthcare

Legal Solutions in Health Reform: Privacy and Health Information Technology

Identifies gaps in the federal health privacy standard and proposes options for strengthening the legal framework for privacy protections in order to build public trust in health information technology. Presents arguments for and against each option

Privacy and Health Information Technology

The increased use of health information technology (health IT) is a common element of nearly every health reform proposal because it has the potential to decrease costs, improve health outcomes, coordinate care, and improve public health. However, it raises concerns about security and privacy of medical information. This paper examines some of the “gaps” in privacy protections that arise out of the current federal health privacy standard, the Health Insurance Portability and Accountability (HIPAA) Privacy Rule, the main federal law which governs the use and disclosure of health information. Additionally, it puts forth a range of possible solutions, accompanied by arguments for and against each. The solutions provide some options for strengthening the current legal framework of privacy protections in order to build public trust in health IT and facilitate its use for health reform. The American Recovery and Reinvestment Act (ARRA) enacted in February 2009 includes a number of changes to HIPAA and its regulations, and those changes are clearly noted among the list of solutions (and ARRA is indicated in the Executive Summary and paper where the Act has a relevant provision)

Towards defining semantic foundations for purpose-based privacy policies

We define a semantic model for purpose, based on which purpose-based privacy policies can be meaningfully expressed and enforced in a business system. The model is based on the intuition that the purpose of an action is determined by its situation among other inter-related actions. Actions and their relationships can be modeled in the form of an action graph which is based on the business processes in a system. Accordingly, a modal logic and the corresponding model checking algorithm are developed for formal expression of purpose-based policies and verifying whether a particular system complies with them. It is also shown through various examples, how various typical purpose-based policies as well as some new policy types can be expressed and checked using our model

Strategies To Evaluate Health Information Exchange Initiatives

The economic stimulus legislation passed in 2009 formalized the adoption of health information technology as a policy priority. While much attention has focused on providers and organizations transitioning to electronic health records, "going digital" is more ambitious than simply replicating manual processes with computers. To realize benefits from new systems, information must be shared between care settings. Health information exchanges (HIEs) are the administrative bodies that enable communication of clinical data. HIEs are complex entities, with a variety of organizational and technical structures. Most HIEs are still in development, but stakeholders need not wait until the organizations are fully operational to perform meaningful evaluations. Qualitative, incremental evaluation efforts have the potential to yield important insights into the ways that HIEs are implemented and sustained. Evaluating HIEs in all stages of their development will provide important lessons that may inform current and future efforts to improve technologies and health

Genetic Information Altruists: How Far and To Whom Does Their Generosity Extend?

It is becoming widely accepted that the digitization of healthcare, constructed around a core foundation of electronic health records, is inevitable (American Reinvestment and Recovery Act, 2009). The capture of digital personal health data is expected to drive efficiency, quality of care, and enhanced clinical discovery; culminating in a vision of the future where medical care is tailored to individuals rather than broad populations. Accompanying these developments is an increasingly strident public debate on the privacy and security of digitized health information. To the extent that discovering new drugs, developing new therapies, and understanding the effects of existing treatment regimens requires highly granular genomic data, the promise of personalized medicine cannot be realized unless individuals voluntarily share their personal genetic information. Using theories of altruism, relationship orientation, and commitment as the core conceptual foundations, we investigate the complex trade-off that individuals make between altruism and self-interest in their decision to disclose identified personal genetic information for research purposes to different stakeholders in the healthcare value chain (e.g. hospitals, pharmaceutical companies, government/public health agencies). Depending on the requesting stakeholder and how close the individual feels to the target entity based on levels of interaction and resultant trust and commitment, the influence of altruism and monetary and non-monetary incentives on willingness to disclose is likely to differ. We test our theory with data from 1,089 respondents from a nationally representative sample using a quasi-experimental, survey methodology. Findings suggest the effects of altruism are situational dependent. While incentives were shown to be positive motivators for consumers in their willingness to provide access, consistent with the “motivational crowding” argument, we find that monetary incentives detract from the positive influence of altruism when hospitals make requests to consumers while non-monetary incentives have the opposite effect. The theoretical and policy implications are discussed

Health Information Technology: Efforts Continue but Comprehensive Privacy Approach Needed for National Strategy

Testimony issued by the Government Accountability Office with an abstract that begins "In April 2004, President Bush called for the Department of Health and Human Services (HHS) to develop and implement a strategic plan to guide the nationwide implementation of health information technology (IT). The plan is to recommend methods to ensure the privacy of electronic health information. GAO was asked to summarize its January 2007 report. The report describes the steps HHS is taking to ensure privacy protection as part of its national health IT strategy and identifies challenges associated with protecting electronic health information exchanged within a nationwide health information network.

Exploring Health Information Exchange (HIE) Through Collaboration Framework: Normative Guidelines for IT Leadership of Healthcare Organizations

Health Information Exchanges (HIEs) hold the promise to integrate patient data residing across disparate information systems in various hospitals to improve care coordination, patient engagement, and provisioning of real-time information to physicians. This research posits that collaboration is the key to HIE’s success. Drawing from the extant literature on collaboration, we discuss collaboration-related challenges that healthcare IT leaders are facing and provide normative guidelines that they can implement during the HIE initiation phase as well as the maintenance phas