The following is a list of links to information on Privacy for research conducted in a general context, as well as with Medicaid populations, for public health applications, and with respect to data use agreements. 

These resources are also available in the links section.

Privacy Update (as of February, 2009)

HIPAA Privacy Rule
A report on the HIPPA privacy rule was recently released by the Institute of Medicine (IOM). Titled Beyond the HIPAA Privacy Rule: Enhancing Privacy, Improving Health Through Research , this report assesses experience with the HIPAA Privacy Rule and offers recommendations on ways to assure improved access to information while protecting personal privacy of health information. In particular, the report addresses the distinct differences between the privacy issues for information-based research, which uses medical records or stored biological samples, and interventional clinical research, which involves people who participate in experimental treatment.

For information on experiences with HIPAA for HSR, please see a summary of the results of the AcademyHealth member survey on HIPAA , conducted by AcademyHealth in December 2007. These resources are also available in the links section.Data Release (General)

Data Release (General)

National Center for Health Statistics
Data release policy
(http://www.cdc.gov/nchs/about/policy/data_release.htm)

General

American Health Information Management Association
Resource for medical records professionals, with detailed information on all aspects of handling and protecting medical records.
(http://www.ahima.org )

American Health Information Management Association Practice Briefs
Oriented towards providers. Includes models and guidance for designated record sets, notice of privacy practices, minimum necessary, uses and disclosures, record destruction, consents, authorizations, marketing and fundraising, record retention, privacy official and security official job descriptions, and privacy training(http://library.ahima.org/xpedio/groups/public/documents/web_assets/bok1_016846.hcst )

HHS Office for Civil Rights
Provides technical assistance materials such as copies of the rules and guidance documents, frequently asked questions (FAQs), and sample business associate contract provisions.
(http://www.hhs.gov/ocr/privacy/index.html)

HHS, Office of the Assistant Secretary for Planning and Evaluation (ASPE)
Provides background information on Administrative Simplification Provisions and Rules including all versions of proposed and final rules, preamble to rules, and HHS’s responses to comments on proposed rules. Useful when issue is not addressed in FAQs.
(http://aspe.hhs.gov/admnsimp/ )

HIPAAGIVES
Provides a forum for those working for and with state and local government. Also maintains free HIPAA materials of all kinds developed by state and local government agencies. Must sign up and be able to demonstrate government connection.
(http://www.hipaagives.org/ )

International Association of Privacy Professionals
Privacy Officers Association web site with links to other HIPAA resources.
(http://www.privacyassociation.org/ )

Privacy Regulation and Guidance/Office of Civil Rights
(http://www.hhs.gov/ocr/hipaa )

OCR website to submit privacy questions
(http://www.hhs.gov/ocr/privacy/hipaa/complaints/index.html)

Workgroup for Electronic Data Interchange (WEDI/SNIP)
Provides an excellent source of publicly available materials developed by volunteers Implementing all aspects of HIPAA for a wide variety of organizations. Contains excellent white papers describing the rules and implementation issues. (http://www.wedi.org/ )

Medicaid
Centers for Medicare and Medicaid Services (CMS)
The official site for HIPAA information related to Medicare and Medicaid. Includes a notice of privacy practices that has been reviewed for compliance. (http://www.cms.gov/HIPAAGenInfo/ )

Public Health
The Privacy Rule and Public Health
(http://www.cdc.gov/mmwr/preview/mmwrhtml/su5201a1.htm )

Research
The Privacy Rule and Research
(http://privacyruleandresearch.nih.gov/ )

**Please note: THIS REPORT HAS NOT BEEN APPROVED BY THE AGENCY FOR HEALTH CARE RESEARCH AND QUALITY (AHRQ).