NAACCR  -- North American Association of Central Cancer Registries NAACCR Annual Conference 2007
Annotated Bibliography on Confidentiality Protection in Data Release
Confidentiality Subcommittee
Data Use and Research Committee
North American Association of Central Cancer Registries
August 2007
Introduction

The Confidentiality Subcommittee of the Data Use and Research Committee of NAACCR has produced this annotated bibliography on confidentiality protection in data release. The bibliography includes abstracts and reviews of source documents that may be useful to those in need of information on confidentiality protection of cancer data released by central cancer registries. Topics of interest include general information on issues regarding confidentiality, best practices to maintain confidentiality, and the hazards of using data in ways that have the potential to breach confidentiality. In addition to summaries of each bibliography entry, the subcommittee has identified types of users that may find the entry particularly useful. Of course, these are suggestions, and each user can peruse the bibliography to find the items of most relevance to their needs.

The documents described here give information on confidentiality issues, methods of ensuring confidentiality, and some tools for analysis and security. These documents should only be used to supplement an organization’s own policies, procedures, and individual judgment.
At-a-glance Guide

Each bibliography entry includes an at-a-glance table to help guide users:

Applications
Principles - Overview of the principles of confidentiality protection and disclosure limitation
Practical applications - Examples of specific policies for data release
Theory - Statistical disclosure limitation theory
Tools - Worksheets or computer programs that registries can use to evaluate disclosure risk; tools to protect data prior to release.
Level
Basic - Introductory material; overviews; general concepts
Intermediate - Descriptions of specific techniques
Advanced - Detailed information on how to apply advanced techniques
Registry Users
Management - Staff who determine policy and procedures. These individuals need to understand and apply the global issues related to disclosure, but not the technical detail.
Steward - Staff responsible for data dissemination via published reports and filling data requests. These individuals need to understand and apply the techniques for assessing disclosure risk and for protecting data.
Research and Surveillance - Staff who have access to confidential record level data for research or surveillance purposes. These individuals need to understand disclosure risk as it relates to issues such as data for small geographic areas or rare cancers.
All Registry Staff - All staff who have access to confidential record level data.
Customers
Research - Registry customers who request access to registry data. This includes access to de-identified data or access to identifiable data as approved by Institutional Review Boards. An example is a researcher requesting access to NAACCR’s CINA Deluxe file. These researchers are distinguished from registry research staff because they are not employees of the registry. These individuals need to understand and apply the registry’s policies for re-release of data in tabular form in manuscripts or published reports.
Public Health Professional - Registry customers who routinely use registry data products such as published tabular data or tabular data generated upon request. This category could include local/state and federal government, not-for-profit advocacy groups, patient support groups, care providers, and legislators and regulators. These individuals need to understand the global issues related to the balance between confidentiality and public health or research.
All Customers - All members of the general public or the public health community that have an interest in cancer registry data. This may include individuals concerned about cancer in their community as well as cancer patients and their families. As with public health professionals, these individuals may need to understand the global issues related to the balance between confidentiality and public health, although they may not be routine users of registry data.
Bibliography

Reports

U.S. National Center for Health Statistics Staff Manual on Confidentiality

U.S. Healthy People 2010 Criteria for Data Suppression

Secondary Use of Personal Health Information in Health Research : Case Studies, Canadian Institutes of Health Research. Public Works and Government Services Canada, 2002

Tri-Council Policy Statement (TCPS) : Ethical Conduct for Research Involving Humans. Canadian Institutes of Health Research, Natural Sciences and Engineering Research Council of Canada, and Social Sciences and Humanities Research Council of Canada. Public Works and Government Services Canada, 1998. (with amendments in 2000, 2002 and 2005)

Data Use and Confidentiality Task Force Report (NAACCR task force), December 1999

Review of the Dissemination of Health Statistics: Confidentiality Guidance. Office for National Statistics, United Kingdom, 2006

Census Confidentiality and Privacy: 1790-2002. U.S. Bureau of the Census 2002

Report on Statistical Disclosure Limitation Methodology, Statistical Policy Working Paper #22, Federal Committee on Statistical Methodology (FCSM), Confidentiality and Data Access Committee (CDAC), December 2005 (Revised)

Putting People on the Map: Protecting Confidentiality with Linked Social-Spatial Data, National Research Council, MP Gutmann, PC Stern, EDS; The National Academic Press, 2007


Software and Tools

Checklist on Disclosure Potential of Proposed Data Releases, July 1999

Computational Aspects of Statistical Confidentiality (CASC) Project

NAACCR Record Uniqueness


Articles

McLaughlin CC. Confidentiality protection in publicly released central cancer registry data. J. Reg Manag. 2002; 84-88

Chen VW. The right to know vs. the right to privacy. J. Reg Manag. 1997; 125-127

Howe H. et al. Method to assess identifiability in electronic data files. Am J Epidemiol. 2007 Mar 1;165(5):597-601

Deapen D. Cancer surveillance and information: balancing public health with privacy and confidentiality concerns (United States). Cancer Causes Control. 2006 Jun;17(5):633-7. Review

Fairchild AL, Gable L, Gostin LO, Bayer R, Sweeney P, Janssen RS. Public goods, Private data: HIV and the history, ethics and uses of identifiable public health information. Public Health Rep. 2007;122 Suppl 1:7-15

Steel PM. Disclosure Risk Assessment for Microdata. U. S. Census Bureau, Statistical Disclosure Control research paper, 2004


Books

Deapen D, Legislation, Regulations, and Confidentiality. In Central Cancer Registries, Design, Management and Use, 2nd Edition, Menck HR, Deapan D, Phillips JL and Tucker TC editors. 2007. Kendall/Hunt. Dubuque Iowa

Doyle P et al, editors, Confidentiality, Disclosure and Data Access, Theory and Practical Applications for Statistical Agencies. 2001, Elsevier, New York

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