INFORMATION FOR
STATE HEALTH POLICY PROGRAM

Model Procedures, Standards, and Reports

Privacy, Confidentiality and Security

• Administrative Simplification 
• CDT's Cryptography Policy Issues Page

A site providing articles, legislation, and links dealing with the protection and security of information transmitted over the Internet.
• CDT's Health Information Privacy Issues Page
• Cyberspace Policy Institute

An institute for the analysis of policy problems which have a significant technological component. Research is driven by the changing nature of telecommunications delivery systems, management information systems, computer networks, compensation for (electronic) intellectual property, and ethics and values among users of computer and communications networks.
• Data Surveillance

A site dealing with data surveillance (the monitoring of individuals and groups via the transactions recorded about them), data privacy, and data protection.
• Document Catalog

The Confidentiality and Privacy document catalog in the Community Health Management Information Systems' (CHMIS) web site
• EPIC Online Guide to Privacy Resources

An online guide to privacy resources available on the World Wide Web, including web sites, newsgroups, and mailing lists.
• EPIC's Privacy

The A to Z's of privacy as compiled by EPIC, a public interest research center in Washington, D.C. that attempts to focus public attention on emerging civil liberties issues and the protection of privacy, the First Amendment, and constitutional values.
• Health Care Privacy Issues

A paper that identifies some information privacy issues arising in relation to health care data arising in sole and group health care practices as well as in larger health care organizations.
• Information About the Medical Records Institute

The Medical Records Institute describes itself as an organization dedicated to the creation and implementation of electronic...
• Medical Record Privacy
• Privacy
• Privacy and Civil Liberties

This page outlines the Computer Professionals for Social Responsibility's (CPSR's) work in defense of privacy and civil liberties.
• Privacy and Medical Databases

A site under construction by Lawrence Berkeley National Laboratory's ELSI (Ethical, Legal, and Social Issues) Project to discuss personal privacy and medical databases.
• Privacy Forum

A moderated digest for the discussion and analysis of issues related to the general topic of privacy (both personal and collective) in the Information Age.
• Privacy Rights Clearinghouse

A site offering an opportunity to learn how to protect personal privacy. It provides in-depth information on a variety of informational privacy issues, as well as practical tips on safeguarding personal privacy.
• The Center for Democracy and Technology

An organization whose mission is to develop and advocate public policies that advance constitutional civil liberties and democratic values in new computer and communications technologies.
• WWW and the Electronic Medical Record

Model Procedures and Protocols

• Bibliographic Formats for Citing Electronic Information

Citation formats based on a book by Li & Crane, Electronic styles: A Handbook for citing electronic information (1996), by Information Today, Inc.
• Ethics and Confidentiality

A report from the Minnesota Health Data Institute on "Guiding Principles Governing Data Access and Disclosure."
• Guide to Social Science Data Preparation and Archiving

A guide intended to help researchers document their datasets and prepare them for archiving. It focuses on the Inter-university Consortium for Political and Social Research (ICPSR) and its practices, preferences, and requirements.
• Healthcare Cost and Utilization Project, 1988-1994 (HCUP-3)

Databases that contain patient-level information, while protecting privacy, for inpatient hospital stays in a uniform format.
• Principles & Protocol for Release of Health Care Data

A report by The South Carolina Data Oversight Council and Health Data Analysis Task-Force on confidentiality of health care and patient data.

Health Data Standards

• AHCPR Report on Informatic Standards

A compilation of activities voluntarily reported by selected healthcare informatics standards organizations. Provided by the Department of Health and Human Services (HHS), Office of Science and Data Development (OSDD), Agency for Health Care Policy and Research (AHCPR).
• Centre for Health Informatics, Aberystwyth

A part of the Institute for Information Management within the Department of Information and Library Studies at the University of Wales. The site is extensive, describing projects run by the Center as well as providing links to hundreds of sites related to medicine, health informatics, and telemedicine.
• Healthcare EDI Coalition (HEDIC)

A non-profit association of healthcare electronic data interchange trading partners who have joined together to facilitate and coordinate implementation and use of standard EDI across the healthcare industry.
• Healthcare Information and Management Systems Society

A not-for-profit organization dedicated to promoting a better understanding of health care information and management systems.
• MSDS Healthcare Standards Home Page

A World Wide Web front end to the Duke FTP server for materials on HL7 and other health informatics standards. It also provides links to Web pages in subdirectories that contain interesting documents.
• Primary Care Informatics

Reports on the Need and Use of Health Data

• Healthcare Cost and Utilization Project, 1988-1994 (HCUP-3)

Databases that contain patient-level information, while protecting privacy, for inpatient hospital stays in a uniform format.
• Making a Powerful Connection:

The Health of the Public and the National Information Infrastruture
A report from the U.S. Public Health Service describing the potential public health applications of the National Information Infrastructure (NII) initiative.
• ASCII Plain Text file
• WordPerfect format

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Information for State Health Policy Program
Revised: February 5, 1998
Home Page URL: http://www2.umdnj.edu/shpp/homepage.htm