Improving HIV Surveillance Data by Using the ATra Black Box System to Assist Regional Deduplication Activities.

BACKGROUND: Focused attention on Data to Care underlines the importance of high-quality HIV surveillance data. This study identified the number of total duplicate and exact duplicate HIV case records in 9 separate Enhanced HIV/AIDS Reporting System (eHARS) databases reported by 8 jurisdictions and compared this approach to traditional Routine Interstate Duplicate Review resolution. METHODS: This study used the ATra Black Box System and 6 eHARS variables for matching case records across jurisdictions: last name, first name, date of birth, sex assigned at birth (birth sex), social security number, and race/ethnicity, plus 4 system-calculated values (first name Soundex, last name Soundex, partial date of birth, and partial social security number). RESULTS: In approximately 11 hours, this study matched 290,482 cases from 799,326 uploaded records, including 55,460 exact case pairs. Top case pair overlaps were between NYC and NYS (51%), DC and MD (10%), and FL and NYC (6%), followed closely by FL and NYS (4%), FL and NC (3%), DC and VA (3%), and MD and VA (3%). Jurisdictions estimated that they realized a combined 135 labor hours in time efficiency by using this approach compared with manual methods previously used for interstate duplication resolution. DISCUSSION: This approach discovered exact matches that were not previously identified. It also decreased time spent resolving duplicated case records across jurisdictions while improving accuracy and completeness of HIV surveillance data in support of public health program policies. Future uses of this approach should consider standardized protocols for postprocessing eHARS data.

Improving HIV Surveillance Data for Public Health Action in Washington, DC: A Novel Multiorganizational Data-Sharing Method.

BACKGROUND: The National HIV/AIDS Strategy calls for active surveillance programs for human immunodeficiency virus (HIV) to more accurately measure access to and retention in care across the HIV care continuum for persons living with HIV within their jurisdictions and to identify persons who may need public health services. However, traditional public health surveillance methods face substantial technological and privacy-related barriers to data sharing. OBJECTIVE: This study developed a novel data-sharing approach to improve the timeliness and quality of HIV surveillance data in three jurisdictions where persons may often travel across the borders of the District of Columbia, Maryland, and Virginia. METHODS: A deterministic algorithm of approximately 1000 lines was developed, including a person-matching system with Enhanced HIV/AIDS Reporting System (eHARS) variables. Person matching was defined in categories (from strongest to weakest): exact, very high, high, medium high, medium, medium low, low, and very low. The algorithm was verified using conventional component testing methods, manual code inspection, and comprehensive output file examination. Results were validated by jurisdictions using internal review processes. RESULTS: Of 161,343 uploaded eHARS records from District of Columbia (N=49,326), Maryland (N=66,200), and Virginia (N=45,817), a total of 21,472 persons were matched across jurisdictions over various strengths in a matching process totaling 21 minutes and 58 seconds in the privacy device, leaving 139,871 uniquely identified with only one jurisdiction. No records matched as medium low or low. Over 80% of the matches were identified as either exact or very high matches. Three separate validation methods were conducted for this study, and they all found ≥90% accuracy between records matched by this novel method and traditional matching methods. CONCLUSIONS: This study illustrated a novel data-sharing approach that may facilitate timelier and better quality HIV surveillance data for public health action by reducing the effort needed for traditional person-matching reviews without compromising matching accuracy. Future analyses will examine the generalizability of these findings to other applications.

Trajectory analyses of virologic outcomes reflecting community-based HIV treatment in Washington DC 1994-2012.

BACKGROUND: Effective treatment of HIV since 1996 has reduced morbidity and mortality through virologic suppression. Combination antiretroviral therapy (cART) has been recognized as key to the prevention of drug resistance and the transmission of infection. We used eighteen years of virologic outcomes in a long-standing cohort of women to describe longitudinal viral load trajectories; and examine factors associated with sustained viremia and mortality. METHODS: We analyzed data from DC WIHS women with > four semiannual visits using a group-based logistic trajectory analysis approach to identify patterns of HIV RNA detection (>80 copies/mL or lower assay limit, and >1000 copies/mL). We verified findings using cumulative viral load suppression-years, explored group characteristics using generalized linear modeling with generalized estimating equations for repeated measures, and examined survival using the Kaplan-Meier and Cox proportional hazard analyses. RESULTS: 329 women contributed 6633 visits between 1994 and 2012 and demonstrated high, moderate, and low probability patterns of HIV RNA detection (>80 copies/mL) in 40.7, 35.6, and 23.7% of participant visits, respectively. Analysis of cumulative years of viral load suppression supported these observations. Kaplan-Meier survival analysis demonstrated high mortality of 31.1% with sustained viremia, but no significant difference in mortality between intermittent viremia and non-viremia patterns, 6.9 and 4.9% respectively. Mortality was associated with higher age, lower CD4+ T lymphocyte count, and sustained viremia by Cox multivariate analysis. CONCLUSIONS: This ecologic study demonstrates the effectiveness of viral suppression, and conversely the association between viremia and mortality. In community delivery of cART for HIV care, distinct patterns of sustained viremia, intermittent viremia, and non-viremia were identified over nearly 18 years in the DC WIHS, capturing the dynamics and complexity of sustaining long-term HIV care. Persistent viremia was associated with lower CD4s and mortality, but surprisingly mortality was not different between continuous suppression and intermittent viremia. Classification of long-term virologic patterns such as these observed HIV treatment "careers" may provide a suitable framework to identify modifiable factors associated with treatment resilience and failure. Both individual and population interventions are needed to reduce transmission, prevent the emergence of drug resistance, and improve outcomes of community ART programs.

Using Ethical Reasoning to Amplify the Reach and Resonance of Professional Codes of Conduct in Training Big Data Scientists.

The use of Big Data--however the term is defined--involves a wide array of issues and stakeholders, thereby increasing numbers of complex decisions around issues including data acquisition, use, and sharing. Big Data is becoming a significant component of practice in an ever-increasing range of disciplines; however, since it is not a coherent "discipline" itself, specific codes of conduct for Big Data users and researchers do not exist. While many institutions have created, or will create, training opportunities (e.g., degree programs, workshops) to prepare people to work in and around Big Data, insufficient time, space, and thought have been dedicated to training these people to engage with the ethical, legal, and social issues in this new domain. Since Big Data practitioners come from, and work in, diverse contexts, neither a relevant professional code of conduct nor specific formal ethics training are likely to be readily available. This normative paper describes an approach to conceptualizing ethical reasoning and integrating it into training for Big Data use and research. Our approach is based on a published framework that emphasizes ethical reasoning rather than topical knowledge. We describe the formation of professional community norms from two key disciplines that contribute to the emergent field of Big Data: computer science and statistics. Historical analogies from these professions suggest strategies for introducing trainees and orienting practitioners both to ethical reasoning and to a code of professional conduct itself. We include two semester course syllabi to strengthen our thesis that codes of conduct (including and beyond those we describe) can be harnessed to support the development of ethical reasoning in, and a sense of professional identity among, Big Data practitioners.

Bridging the divide between genomic science and indigenous peoples.

The new science of genomics endeavors to chart the genomes of individuals around the world, with the dual goals of understanding the role genetic factors play in human health and solving problems of disease and disability. From the perspective of indigenous peoples and developing countries, the promises and perils of genomic science appear against a backdrop of global health disparity and political vulnerability. These conditions pose a dilemma for many communities when attempting to decide about participating in genomic research or any other biomedical research. Genomic research offers the possibility of improved technologies for managing the acute and chronic diseases that plague their members. Yet, the history of particularly biomedical research among people in indigenous and developing nations offers salient examples of unethical practice, misuse of data, and failed promises. This dilemma creates risks for communities who decide either to participate or not to participate in genomic science research. Some argue that the history of poor scientific practice justifies refusal to join genomic research projects. Others argue that disease poses such great threats to the well-being of people in indigenous communities and developing nations that not participating in genomic research risks irrevocable harm. Thus, some communities particularly among indigenous peoples have declined to participate as subjects in genomic research. At the same time, some communities have begun developing new guidelines, procedures, and practices for engaging with the scientific community that offer opportunities to bridge the gap between genomic science and indigenous and/or developing communities. Four new approaches warrant special attention and further support: consulting with local communities; negotiating the complexities of consent; training members of local communities in science and health care; and training scientists to work with indigenous communities. Implicit is a new definition of "rigorous scientific research," one that includes both community development and scientific progress as legitimate objectives of genomic research. Innovative translational research is needed to develop practical, mutually acceptable methods for crossing the divide between genomic researchers and indigenous communities. This may mean the difference between success and failure in genomic science, and in improving health for all peoples.

The executive summary of the National Forum on the Future of Defense Health Information Systems.

The Department of Defense (DoD) has been engaged in the development and deployment of the longitudinal health record (LHR). It has achieved remarkable technological success by handling vast amounts of patient data coming from clinical sites around the globe. Interoperability between DoD and VA has improved and this information sharing capability is expected to continue to expand as the defense health information system becomes an integral part of the national network. On the other hand, significant challenges remain in terms of user acceptance, ability to incorporate innovations, software acquisition methodology, and overall systems architecture.

Force Health Protection: the mission and political context of the longitudinal health record.

Drawing upon an extensive search of publically available literature and discussions at the "National Forum on the Future of the Defense Health Information System," this article documents the evolving mission and political context of the longitudinal health record (LHR) as an instrument for Force Health Protection (FHP). Because of the Gulf War syndrome controversy, the Department of Defense (DoD) launched an ambitious, complex series of programs designed to create a comprehensive, integrated defense health surveillance capability to assure FHP and keep faith with the American people. This "system of systems" includes individual component systems to perform specific functions such as disease surveillance, battlefield assessment, and patient care and consolidates these diverse types of information into centrally accessible archives that serve the interests of occupational health, preventive medicine, medical strategic planning, and longitudinal patient health care. After 25 years of effort and major accomplishments, progress toward a LHR remains uneven and controversy persists.

A heuristic indication and warning staging model for detection and assessment of biological events.

OBJECTIVE: This paper presents a model designed to enable rapid detection and assessment of biological threats that may require swift intervention by the international public health community. DESIGN: We utilized Strauss' grounded theory to develop an expanded model of social disruption due to biological events based on retrospective and prospective case studies. We then applied this model to the temporal domain and propose a heuristic staging model, the Wilson-Collmann Scale for assessing biological event evolution. MEASUREMENTS: We retrospectively and manually examined hard copy archival local media reports in the native vernacular for three biological events associated with substantial social disruption. The model was then tested prospectively through media harvesting based on keywords corresponding to the model parameters. RESULTS: Our heuristic staging model provides valuable information about the features of a biological event that can be used to determine the level of concern warranted, such as whether the pathogen in question is responding to established public health disease control measures, including the use of antimicrobials or vaccines; whether the public health and medical infrastructure of the country involved is adequate to mount the necessary response; whether the country's officials are providing an appropriate level of information to international public health authorities; and whether the event poses a international threat. The approach is applicable for monitoring open-source (public-domain) media for indications and warnings of such events, and specifically for markers of the social disruption that commonly occur as these events unfold. These indications and warnings can then be used as the basis for staging the biological threat in the same manner that the United States National Weather Service currently uses storm warning models (such as the Saffir-Simpson Hurricane Scale) to detect and assess threatening weather conditions. CONCLUSION: Used as a complement to current epidemiological surveillance methods, our approach could aid global public health officials and national political leaders in responding to biological threats of international public health significance.

Breaching the security of the Kaiser Permanente Internet patient portal: the organizational foundations of information security.

This case study describes and analyzes a breach of the confidentiality and integrity of personally identified health information (e.g. appointment details, answers to patients' questions, medical advice) for over 800 Kaiser Permanente (KP) members through KP Online, a web-enabled health care portal. The authors obtained and analyzed multiple types of qualitative data about this incident including interviews with KP staff, incident reports, root cause analyses, and media reports. Reasons at multiple levels account for the breach, including the architecture of the information system, the motivations of individual staff members, and differences among the subcultures of individual groups within as well as technical and social relations across the Kaiser IT program. None of these reasons could be classified, strictly speaking, as "security violations." This case study, thus, suggests that, to protect sensitive patient information, health care organizations should build safe organizational contexts for complex health information systems in addition to complying with good information security practice and regulations such as the Health Insurance Portability and Accountability Act (HIPAA) of 1996.

Safe teleradiology: information assurance as project planning methodology.

The Georgetown University Medical Center Department of Radiology used a tailored version of OCTAVE, a self-directed information security risk assessment method, to design a teleradiology system that complied with the regulation implementing the security provisions of the Health Insurance Portability and Accountability Act (HIPAA) of 1996. The system addressed threats to and vulnerabilities in the privacy and security of protected health information. By using OCTAVE, Georgetown identified the teleradiology program's critical assets, described threats to the assurance of those assets, developed and ran vulnerability scans of a system pilot, evaluated the consequences of security breaches, and developed a risk management plan to mitigate threats to program assets, thereby implementing good information assurance practices. This case study illustrates the basic point that prospective, comprehensive planning to protect the privacy and security of an information system strategically benefits program management as well as system security.

Organizing safety: conditions for successful information assurance programs.

Organizations must continuously seek safety. When considering computerized health information systems, "safety" includes protecting the integrity, confidentiality, and availability of information assets such as patient information, key components of the technical information system, and critical personnel. "High Reliability Theory" (HRT) argues that organizations with strong leadership support, continuous training, redundant safety mechanisms, and "cultures of high reliability" can deploy and safely manage complex, risky technologies such as nuclear weapons systems or computerized health information systems. In preparation for the Health Insurance Portability and Accountability Act (HIPAA) of 1996, the Office of the Assistant Secretary of Defense (Health Affairs), the Offices of the Surgeons General of the United States Army, Navy and Air Force, and the Telemedicine and Advanced Technology Research Center (TATRC), US Army Medical Research and Materiel Command sponsored organizational, doctrinal, and technical projects that individually and collectively promote conditions for a "culture of information assurance." These efforts include sponsoring the "P3 Working Group" (P3WG), an interdisciplinary, tri-service taskforce that reviewed all relevant Department of Defense (DoD), Miliary Health System (MHS), Army, Navy and Air Force policies for compliance with the HIPAA medical privacy and data security regulations; supporting development, training, and deployment of OCTAVE(sm), a self-directed information security risk assessment process; and sponsoring development of the Risk Information Management Resource (RIMR), a Web-enabled enterprise portal about health information assurance.

Media attitudes vs. use: the contribution of context to the communication environment in telemedicine.

Media attitudes and media use have been the focus of considerable academic research. This article uses this research to explore patient and health care practitioner attitudes toward telemedicine interactions via videoconferencing technology.