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PubMed2003

Privacy and the secondary use of data in health research in Scotland.

In response to new data protection legislation for the UK and widespread concern about its implications, the Scottish Executive set up the Confidentiality and Security Advisory Group for Scotland (CSAGS) to place the use of personal health information in a modern setting. The group affirmed the principle of consent and, more broadly, the importance of involving patients and the public in decisions about their health information. It promoted methods of acceptable anonymisation of data, and the need for good stewardship and disclosure of data uses to the greatest extent possible, where explicit individual consent and anonymisation were not practicable. They did not recommend pursuit of legislation, preferring consensus, informed debate and widespread acceptance of the proposed arrangements. The Scottish Executive is now responding to the work of CSAGS to develop systems that command public and patient confidence, promote good practice for clinicians and researchers, and preserve important public health and research functions.

Access to Information↗

PubMed2006

[Research on testing the robustness of DICOM-e-mail secure teleradiology systems].

DICOM-e-mail is a secure teleradiology protocol released by German Radiology Society and has already been applied clinically. To improve the robustness of the system, the protocol has been upgraded by adding some mechanisms such as system feedback. Moreover, a test method is also implemented by sending erroneous mails to application software that supports DICOM-e-mail. Through the tests for two different DICOM-e-mail teleradiology application, the validity of the new protocol is proved and at the same time some bugs are found. The implementation of the latest protocol and the general error tests can help to make the whole teleradiology system a better robustness. The implementation of DICOM-e-mail protocol in our country is also discussed in this paper.

Computer Communication Networks↗

PubMed2004

How (not) to protect genomic data privacy in a distributed network: using trail re-identification to evaluate and design anonymity protection systems.

The increasing integration of patient-specific genomic data into clinical practice and research raises serious privacy concerns. Various systems have been proposed that protect privacy by removing or encrypting explicitly identifying information, such as name or social security number, into pseudonyms. Though these systems claim to protect identity from being disclosed, they lack formal proofs. In this paper, we study the erosion of privacy when genomic data, either pseudonymous or data believed to be anonymous, are released into a distributed healthcare environment. Several algorithms are introduced, collectively called RE-Identification of Data In Trails (REIDIT), which link genomic data to named individuals in publicly available records by leveraging unique features in patient-location visit patterns. Algorithmic proofs of re-identification are developed and we demonstrate, with experiments on real-world data, that susceptibility to re-identification is neither trivial nor the result of bizarre isolated occurrences. We propose that such techniques can be applied as system tests of privacy protection capabilities.

Algorithms↗

PubMed1999

Java-based framework for the secure distribution of electronic medical records.

In this paper, we present a Java-based framework for the processing, storage and delivery of Electronic Medical Records (EMR). The choice of Java as a developmental and operational environment ensures operability over a wide-range of client-side platforms, with our on-going work emphasising migration towards Extensible Markup Language (XML) capable Web browser clients. Telemedicine in support of womb-to-tomb healthcare as articulated by the Multimedia Supercorridor (MSC) Telemedicine initiative--which motivated this project--will require high-volume data exchange over an insecure public-access Wide Area Network (WAN), thereby requiring a hybrid cryptosystem with both symmetric and asymmetric components. Our prototype framework features a pre-transaction authentication and key negotiation sequence which can be readily modified for client-side environments ranging from Web browsers without local storage capability to workstations with serial connectivity to a tamper-proof device, and also for point-to-multipoint transaction processes.

Computer Communication Networks↗

PubMed1996

Extraction and anonymity protocol of medical file.

To carry out the epidemiological study of patients suffering from a given cancer, the Department of Medical Informatics (DIM) has to link information coming from different hospitals and medical laboratories in the Burgundy region. Demands from the French department for computerized information security (Commission Nationale de l'Informatique et des Libertés: CNIL), in regard to abiding by the law of January 6, 1978, completed by the law of July 1st, 1994 on nominal data processing in the framework of medical research have to be taken into account. Notably, the CNIL advised to render anonymous patient identities before the extraction of each establishment file. This paper describes a recently implemented protocol, registered with the French department for computerized information security (Service Central de la Sécurité des Systèmes d'information : SCSSI) whose purpose is to render anonymous medical files in view of their extraction. Once rendered anonymous, these files will be exportable so as to be merged with other files and used in a framework of epidemiological studies. Therefore, this protocol uses the Standard Hash Algorithm (SHA) which allows the replacement of identities by their imprints while ensuring a minimal collision rate in order to allow a correct linkage of the different information concerning the same patient. A first evaluation of the extraction and anonymity software with regard to the purpose of an epidemiological survey is described here. In this paper, we also show how it would be possible to implement this system by means of the Internet communication network.

Computer Communication Networks↗

PubMed1999

Confidentiality issues within a clinical information system: moving from data-driven to event-driven design.

Within a hospital, the moving of medical information systems from retrospective data-gathering methods to prospective clinical information systems raises the question of the confidentiality of patient data. A method of improving the traditional matrix model usually used to achieve access controls is described. The event-driven model refers to the way a security system ensures that a given user has a valid "need-to" relationship to a given patient. Events are defined as the occurrence of specific data that trigger the creation or the updating of the relationship between the identity of a user and the identity of a patient (e.g., admission, discharge, transfer, prescription, and report). The creation and the deletion of the relationships between users and patients are based on numerous repositories and working lists of patients. This implementation requires an organization of the hospital activities which is able to manage, in a real-time manner, those repositories as closely as possible to the steps occurring during the patient's care process. Although this approach seems to reasonably fit the dynamic of the care process, it adds significant organizational constraints.

Computer Security↗

PubMed2006

How automated access verification can help organizations demonstrate HIPAA compliance: A case study.

This case study of Sharp HealthCare takes an in depth look at how the organization has embedded security policies into its business process and automated workflow to ensure users are granted only the IT access that is necessary for them to perform their jobs and to ensure patient privacy Some of the most pressing audit and compliance concerns in healthcare organizations today revolve around the need to constantly review and give an account for users' IT access. The need for this at Sharp is exacerbated because of the high rate of change within the organization and the large percentage of non-employee staff such as traveling nurses moving throughout hospital departments on their rotations. By implementing a software solution to verify the accuracy of user access rights or automatically initiate appropriate corrective actions, Sharp is now able to extend the responsibility and accountability for compliance to the most appropriate resources.

Access to Information↗

PubMed2005

A web-based system for managing and co-ordinating multiple multisite studies.

Efficient and secure collection and management of information is essential in any modern biomedical study. Data management and coordination of multisite studies is a complex process. It involves development of systems for data collection, data cleaning with quality assurance checks, and specimen tracking, as well as development of procedures for conducting the study, training clinical sites, and communicating with sites to answer study questions and resolve and track data inquiries and resolutions. We developed a secure web-based system that is designed to automate evaluation of eligibility criteria and data collection, track specimens, serve as a resource for study-specific information, facilitate communication across sites in multisite studies, track data queries and resolutions, and allow administrative management of studies. The system combines a common framework across studies that defines the internal structure for all the web pages, with a study-specific one that defines the content of each page via a relational database. This combination creates a flexible and efficient environment enabling several multisite studies to be simultaneously or consecutively implemented and managed in a timely manner. We describe the development process, the system and its evaluation, current status, lessons learned, and future development plans.

Biomarkers, Tumor↗

PubMed2000

[Security of healthcare data networks used for epidemiological studies].

Record linkage, for compiling sameperson records from various source files, can improve the feasibility of epidemiological research using populationbased studies. The question is comply with the European legislation on data privacy and data security. For example, a computerized record hash coding and linkage procedure is described to link medical information within the framework of epidemiological followup. Before their extraction, files are rendered anonymous using a oneway hash coding based on the standard hash algorithm (SHA) function. Once rendered anonymous using the software ANONYMAT, the linkage of patient information can be accomplished by means of a mixture model, taking into account several identification variables. An application of this anonymous record linkage procedure was carried out in order to link medical files on cancer, from 3 hospitals of the French RhôneAlpes region. This application stresses how the use of the ANONYMAT software allows compliance with the legislation on data confidentiality without entailing problems on data availability.

Computer Communication Networks↗

PubMed2005

Security and confidentiality approach for the Clinical E-Science Framework (CLEF).

OBJECTIVES: CLEF is an MRC sponsored project in the E-Science programme that aims to establish methodologies and a technical infrastructure for the next generation of integrated clinical and bioscience research. METHODS: The heart of the CLEF approach to this challenge is to design and develop a pseudonymised repository of histories of cancer patients that can be accessed by researchers. Robust mechanisms and policies have been developed to ensure that patient privacy and confidentiality are preserved while delivering a repository of such medically rich information for the purposes of scientific research. RESULTS: This paper summarises the overall approach adopted by CLEF to meet data protection requirements, including the data flows, pseudonymisation measures and additional monitoring policies that are currently being developed. CONCLUSION: Once evaluated, it is hoped that the CLEF approach can serve as a model for other distributed electronic health record repositories to be accessed for research.

Access to Information↗

PubMed2000

The implementation of security in distributed infant and maternity care.

According to the Finnish National Fund for Research and Development in the information society, knowledge is the basis of education and culture and the most important production factor. ICT significantly promotes interaction and exchange between individuals, business enterprises and other organisations, utilisation of information, and provision of services and access to them. Our project is one of approximately 300 projects which are developing seamless social and health care ICT services in Finland [P. Ruotsalainen, Asiakaslähtöinen palveluketju ja tietote-knologia, Kirjassa: Nouko-S. Juvonen, P. Ruotsalainen, I. Kiikkala (toim), Hyvinvointivaltion palveluketjut. Hygieia. Kustannusosakeyhtiö Tammi, Tammer-Paino Oy, Tampere, 2000]. The principal aim is both to research and create a new model for social and health care services and to disseminate the know-how brought about for the benefit of software enterprises and educational institutes. A product called Maternity Clinic on the Net is developed in the project, and it can be applied to the national and international social and health care services.

Adult↗

PubMed2006

Using Healthcare IC Cards to manage the drug doses of chronic disease patients.

In Taiwan's medical system, the Healthcare IC Card is used as form of secure data storage. This research applies the Healthcare IC Card to record the chronic disease patient's recent drug doses, diagnoses and prescriptions. With the Hospital Information System, this research combines the diagnosis records stored in the Healthcare IC Card to establish a platform which could simulate the procedures of a doctor in examining a patient and checking the circumstances of the patient's repetitive drug doses and drugs interactions. The experiment is based on a data log of about 22,000 items of drug prescribed to 43 diabetes patients and about 88,200 items to 192 high blood pressure patients. The results show that the proposed approach would have reduced the waste of medical resources, strengthened Taiwan's medical system and increased the public's health.

Chronic Disease↗

PubMed2004

Electronic medical record systems in Israel's public hospitals.

BACKGROUND: Various medical centers in Israel have recently incorporated electronic medical record systems. Knowing the EMR systems' features and pattern of use is an essential step for developing locally and nationally integrated systems. OBJECTIVES: To evaluate the status of EMR systems in all major general hospitals in Israel in terms of the applications used and the patterns of use. METHODS: Structured questionnaires were sent to hospital directors and directors of medical informatics units of 26 general and pediatric hospitals serving the vast majority of the population in Israel. The questionnaire included questions pertaining to the EMR systems, their usage, and the attitude of the participants to data security issues. RESULTS: Of the 26 general hospitals 23 (88.4%) returned the questionnaires. Of these, 21 (91.3%) use EMR systems. Twenty-seven different types of systems are in use in Israeli hospitals, and generally more than one type is used in a hospital. Physicians work with EMR systems in over 98% of the departments. Also, the EMR systems are used for clinical admission and discharge in over 90% of the departments and for medical daily follow-up in about 45%. CONCLUSIONS: Most of the hospitals in Israel use EMR systems but there is no standard data model. Physicians are the main users but the amount of data entered is still limited. Adoption of standards is essential for the integration of electronic patient records across Israeli healthcare organizations.

Adolescent↗

PubMed1996

Pseudonyms for cancer registries.

In order to conform to the rigid German legislation on data privacy and security we developed a new concept of data flow and data storage for population-based cancer registries. A special trusted office generates a pseudonym for each case by a cryptographic procedure. This office also handles the notification of cases and communicates with the reporting physicians. It passes pseudonymous records to the registration office for permanent storage. The registration office links the records according to the pseudonyms. Starting from a requirements analysis we show how to construct the pseudonyms; we then show that they meet the requirements. We discuss how the pseudonyms have to be protected by cryptographic and organizational means. A pilot study showed that the proposed procedure gives acceptable synonym and homonym error rates. The methods described are not restricted to cancer registration and may serve as a model for comparable applications in medical informatics.

Anonyms and Pseudonyms↗

PubMed2006

The Health Insurance Portability and Accountability Act: does it live up to the promise?

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) was passed by Congress with two formidable tasks: (1) reform the insurance market; and (2) simplify healthcare administrative processes. From these ambitious beginnings, HIPAA has since taken on major healthcare issues including administrative simplification, security, privacy, and patient confidentiality. In November 1997, the Secretary of Health and Human Services (DHHS) introduced the proposed "standards" for what is referred to as "administrative simplification". But, establishing the standards and guidelines necessary for administrative compliance was not an easy undertaking. DHHS estimated that 400 different formats were used in the US for healthcare claims processing. Three years later (August 2000), the Final Rule for Standards for Electronic Transactions and Code Sets was published by DHHS. The rule provided for national standardization of the most common healthcare transactions and several code sets. The compliance deadline for implementation of the new transactions and code sets was set for October, 2002. In January 2001, Congress enacted The Administrative Simplification Compliance Act to provide the industry with additional time to reach compliance. Yet, recent survey results by Phoenix Health Systems and the Health Information and Management Society (HIMSS) indicate many providers and payers are not fully compliant with the security and privacy regulations mandated by HIPAA. This issue threatens the effectiveness of administrative simplification and the integrity of healthcare information. Overall, HIPAA does offer the promise of a more efficient and effective means of sharing and disseminating vital healthcare information. But, many experts have concerns that the implementation and maintenance of HIPAA standards and policies will become a financial burden for many in the healthcare industry. Although DHHS has established mandates for the healthcare industry, many deadlines have been extended and the standards of administrative simplification continue to evolve over time. Others question whether the Department of Health and Human Services is capable of spearheading an information technology revolution in the healthcare industry. Unfortunately, it may take several years before the industry is able to realize any true cost savings from administrative simplification. Yet, few can question how HIPAA has revolutionized information technology in the healthcare industry.

Computer Security↗

PubMed2006

Use of secure e-mail and telephone: psychiatric consultations to accelerate rural health service delivery.

Telemedicine is one strategy to improve the accessibility and quality of specialty healthcare to rural settings. After nearly 10 years of video evaluation of patients in rural primary care, telephone and e-mail physician-to-physician consultations were initiated to supplement video and hasten treatment initiation. This paper proposes a model of using telephone and e-mail consultations before or in place of video consultations, because the latter are not always available or timely. Two cases are presented in depth to delineate clinical, consultation, and health services issues. Early use of telephone appears to accelerate the telepsychiatric consultation and resulted in clinical improvement for patients. Primary care providers (PCPs) appeared satisfied with the process of these consultations. The average duration of consultation was about 10 minutes for each party. Telephone and e-mail consultation appear satisfactory to providers and inexpensive, but need to be further evaluated in terms of clinical, health service, and cost outcomes.

Adult↗

PubMed2002

Design and development of an Internet registry for congenital heart defects.

BACKGROUND: Congenital Heart Defects (CHD) are conditions that encompass more than 50 diagnoses and are due to developmental abnormalities early in fetal life. The King Faisal Specialist Hospital and Research Centre in the Kingdom of Saudi Arabia treats approximately 100 new cases per month. We recently developed a new CHD Registry that captures, stores and processes our data via the Internet. METHODS: The Registry was developed using Hypertext Markup Language (HTML), Microsoft Active Server Pages and Microsoft Structured Query Language (SQL). RESULTS: Details of CHD cases are captured in a World Wide Web (WWW) Registry, permitting any browser-enabled PC or Mac to participate fully in all registry functions, including data-entry, viewing, editing, searching, reporting, validating, charting, and exporting data subsets to statistics packages. It includes "administrative" features and an active security system. The paper forms have been designed to reflect the "look and feel" of the Web pages. Automatic validation procedures are also included. CONCLUSIONS: Our Registry has been in operation for 3 years. It serves 10 PCs and contains more than 3,000 registered cases of CHD. It is the first CHD Registry to be fully functional on the Internet. It is also the first dedicated CHD registry, and the first to routinely report on the full spectrum of CHD diagnoses. The WWW offers several logistical advantages to disease registries, especially those that represent large regions. It also offers the possibility of sharing resources between registries, facilitating the aggregation and analysis of disease data on a world-wide scale. This is useful for rare diseases such as CHD (see http://rc.kfshrc.edu.sa/chdr/demo/).

Adolescent↗

PubMed2001

The personal internetworked notary and guardian.

In this paper, we propose a secure, distributed and scaleable infrastructure for a lifelong personal medical record system. We leverage on existing and widely available technologies, like the Web and public-key cryptography, to define an architecture that allows patients to exercise full control over their medical data. This is done without compromising patients' privacy and the ability of other interested parties (e.g. physicians, health-care institutions, public-health researchers) to access the data when appropriately authorized. The system organizes the information as a tree of encrypted plain-text XML files, in order to ensure platform independence and durability, and uses a role-based authorization scheme to assign access privileges. In addition to the basic architecture, we describe tools to populate the patient's record with data from hospital databases and the first testbed applications we are deploying.

Computer Security↗