RESOURCES

General Readings

• Markle: The Connecting for Health Common Framework: Overview and Principles . This is a background of the issues. The issues and principles are presented not as workshop dogma but as a forum for critique.
• A broader set of privacy and confidentiality principles. Includes Markle, EU, and others.
• The Common Framework Policy Guides: How Information is Protected (P1-8) . These policies are one approach to implementing principles.
• Personal Health Group Final Report, 2003 . This somewhat dated approach provides references for consumer-centric concerns.
• Nine Domains of Privacy and Security. This document is part of a federal contract managed by the Research Triangle Institute involving over 30 states and territories. An initial "9 domains" document published by the Florida workgroup provides a strong framework for categorizing policy solutions and issues. This framework (initially published in June) may change but is a valuable starting point.
• Liberty Alliance Privacy and Security Best Practices (2003). Somewhat dated but a good framework
• International Security Trust and Privacy Alliance. The International Security, Trust, and Privacy Alliance (ISTPA) is a global alliance of companies, institutions and technology providers working together to clarify and resolve existing and evolving issues related to security, trust, and privacy. The ISTPA's focus is on the protection of personal information.
• NIST Guide to Implementing HIPAA. This 137-page December 2005 guide is comprhensive in scope.
• Council for Affordable Quality Healthcare. A group of plans and other organizations focusing on administrative transactions and related matters.
• StateRHIO.org This consensus project web site addresses state government and will include draft documents that include the complex interdpendencies of privacy policies, technology, and financial reality.

Legislative Trackers & Bills

• Epic Bill Track site
• Independent Health Record Bank Act of 2006 (S.3454)
• HIPAA History - HHS Recommendations (1997)
• Are City Health Department Lead Citation Records Open to the Public? (Hamilton County, Ohio: State ex rel. Cincinnati Enquirer v. Daniels, Case no. 2005-0068)

Data-Sharing Agreements

• A Case Study of a Successful Healthcare Data Sharing Agreement (Indiana)
• Template for a Comprehensive Health Care Information Protection Agreement (HealthKey, 2001)
• Connecting for Health Key Data Sharing Topics
• Connecting for Health Model Contract
• MidSouth eHealth Alliance Policies Table
• MidSouth eHealth Alliance Fact Sheet
• Memorandum of Understanding (MOU) generic draft

Surveys

• National Consumer Health Privacy Survey 2005 - Health Privacy -CHCF.org. Conducted by Forrester Research, the survey reveals that-despite federal protections under HIPAA-two in three Americans are concerned about the confidentiality of their personal health information and are largely unaware of their privacy rights.
• Markle Foundation Survey, October, 2005. This survey shows support for an information exchange but concerns about privacy and confidentiality. (pdf 2003 survey)