Balancing access to health data and privacy: A review of the issues and approaches for the future

Health Services Research

Volumn 45, Issue 5 PART 2, 2010, Pages 1456-1467

  Lane, Julia ^a   Schur, Claudia ^b  

^a NATIONAL SCIENCE FOUNDATION   (United States)

^b SOCIAL AND SCIENTIFIC SYSTEMS INC   (United States)

Author keywords

Administrative data uses; confidentiality privacy issues; dissemination issues; health policy politics law regulation; research ethics institutional review boards publication

Indexed keywords

CLINICAL ASSESSMENT; COMPUTER SECURITY; CONFIDENTIALITY; DATA ANALYSIS; HEALTH SERVICE; HEALTH SURVEY; INFORMATION PROCESSING; LICENSING; MEDICAL RESEARCH; PRIVACY; REVIEW; RISK ASSESSMENT; SOCIAL ENVIRONMENT;

ACCESS TO INFORMATION; CONFIDENTIALITY; FORECASTING; HEALTH SERVICES; HEALTH SERVICES RESEARCH; HUMANS;

EID: 77956576427     PISSN: 00179124     EISSN: 14756773     Source Type: Journal    
DOI: 10.1111/j.1475-6773.2010.01141.x     Document Type: Review

References (16)

1. Abowd, J. J. Lane. 2004 New Approaches to Confidentiality Protection: Synthetic Data, Remote Access and Research Data Centers In Privacy in Statistical Databases, edited by J. Domingo-Ferrer V. Torra, pp. 282 289. Berlin : Springer-Verlag.
2. American Statistical Association Open Letter on Proposed Changes to CMS Part D Public Use Files, September 17, 2008 [accessed on March 15, 2009]. Available at
3. Balk, D. 2003 Confidentiality Issues Arising from Integrating Social and Health Behavioral Data with Geospatial Data In NSF Confidentiality Workshop, edited by J. Lane. New York: Trustees of Columbia University.
4. Berk, M., C. Schur P. Mohr. 1990 Using Survey Data to Estimate Prescription Drug Costs Health Affairs 9 (3) : 146 156.
5. Corey, C. H. Freeman. 1990. Use of Telephone Interviewing in Health Care Research. Health Services Research. University of California, Los Angeles.
6. Doyle, P., J. Lane, J. Theeuwes L. Zayatz., eds. 2001. Confidentiality, Disclosure and Data Access: Theory and Practical Applications for Statistical Agencies. Amsterdam : North Holland.
7. Duncan, G., S. Fienberg, R. Krishnan, R. Padman S. F. Roehrig. 2001 Disclosure Limitation Methods and Information Loss for Tabular Data In Confidentiality, Disclosure and Data Access: Theory and Practical Applications for Statistical Agencies, edited by P. Doyle et al., pp. 135 166. Amsterdam: North Holland.
8. Duncan, G., S. KellerMcNulty L. Stokes. 2004. Database Security and Confidentiality: Examining Disclosure Risk vs. Data Utility through the R-U Confidentiality Map. Los Alamos National Laboratory, NM: National Institute for Statistical Sciences.
9. Gunn, P. P., A. Fremont, M. Bottrell, L. Shugarman, J. Galegher T. Bikson. 2004 The Health Insurance Portability and Accountability Act Privacy Rule: A Practical Guide for Researchers Medical Care 42 : 321 327.
10. Guttman, M. P. P. Stern, eds. 2007. Putting People on the Map: Protecting Confidentiality with Linked Social-Spatial Data. Washington, DC : National Academies Press.
11. Lane, J. 2007 Optimizing the Use of Microdata: An Overview of the Issues Journal of Official Statistics 23 (3) : 299 317.
12. Lane, J. 2010 Administrative and Survey Data In Handbook of Survey Research, edited by P. Marsden J. Welsh, sec. 21. Oxford, England : Oxford University Press.
13. Machlin, S., J. Cohen, A. Elixhauser, K. Beauregard C. Steiner. 2009 Sensitivity of Household Reported Medical Conditions in the Medical Expenditure Panel Survey Medical Care 47 (6) : 618 625.
14. Ness, R. B. 2007 Influence of the HIPAA Privacy Rule on Health Research Journal of American Medical Association 298 (18) : 2164 2170.
15. Waite, L. J., E. O. Laumann, A. Das L. P. Schumm. 2009 Sexuality: Measures of Partnerships, Practices, Attitudes, and Problems in the National Social Life, Health and Aging Study Journals of Gerontology: Social Sciences 64B (1S) : I56 I66.
16. Winkler, W. 2005, Overview of Record Linkage and Current Research Directions. Washington, D.C.: U.S. Bureau of the Census, Statistical Research Division Report.