Confidentiality of Electronic Health Data: Methods for Protecting Personally Identifiable Information. Research & Quality Review

07/03/1996

Agency for Health Care Policy and Research (US). Report to Congress: the feasibility of linking research-related data bases to federal and non-federal medical adminstrative data bases. Rockville (MD): The Agency; 1991 Apr. (AHCPR Pub; no. 91-0003).

Benbassat J, Levy M. Ethical and legal problems in researcher's access to data stores. In: Allebeck P, Jannsson B, editors. Ethics in medicine: individual integrity versus demands of society. New York: Raven Press; 1990. p. 159- 65.

Bentley-Cooper JE. Protecting human research from an invasion of privacy: the unintended results of the Commonwealth Privacy Act 1988. Aust J Public Health 1991 Sep;15(3):228-34.

Berglund CA. Australian standards for privacy and confidentiality of health records in research: implications of the Commonwealth Privacy Act. Med J Aust 1990 Jun 18;152(12):664-9.

Beto JA, Geraci MC, Marshall PA, Bansal VK. Pharmacy computer prescription databases: methodologic issues of access and confidentiality. Ann Pharmacother 1992 May;26(5):686-91.

Clayton EW. Panel comment: why the use of anonymous samples for research matters. J Law Med Ethics 1995;23(4):375-7.

Donaldson MS. Regional health databases, health services research, and confidentiality: summary of an invitational workshop. National Implications of the Development of Regional Health Database Organizations; 1994 Jan 31-Feb 1; Washington. Washington: Institute of Medicine; 1994. 49 p.

Donaldson MS, Lohr KN, editors. Health data in the information age: use, disclosure, and privacy. Washington: National Academy Press; 1994. 257 p.

Edouard L, Rawson NS. Use of personal records for research purposes. Identification numbers help maintain confidentiality [letter]. BMJ 1995 Jan 28;310(6974):257-8. Comment on: BMJ 1994 Nov 26;309(6966):1422- 4.

Fayerweather WE, Tirey SL, Baldwin JK, Hoover BK. Issues in data sharing and access: an industry perspective. J Occup Med 1991 Dec;33(12):1253-6.

Flaherty DH. Privacy, confidentiality, and the use of Canadian health information for research and statistics. Can Public Adm 1992 Spring;35(1):75-93.

Gostin LO, Lazzarini Z. Childhood immunization registries. A national review of public health information systems and the protection of privacy. JAMA 1995 Dec 13;274(22):1793-9.

Gulbinat W. Dialogue: will the increased integration of information systems necessitate lowering standards for patient confidentiality and data privacy? Balancing individual and societal needs: micro- vs. macro-ethics. Behav Healthc Tomorrow 1994 Jan-Feb;3(1):32, 39-41.

Hakulinen T. [Cancer registry and data security]. Nord Med 1993;108(8-9):213-5. (Swe).

Harding N, Giles A, Graveney M. Evolution and protection of the health care record as a European document. In: Commission of the European Communities DG XIII/F AIM. Data protection and confidentiality in health informatics: handling health data in Europe in the future. Washington: IOS Press; 1991. p. 88-121. (Studies in health technology and informatics; vol. 1).

Helgason T. Epidemiological research needs access to data. Scand J Soc Med 1992 Sep;20(3):129-33.

Jones JK, Staffa J, Lian J, Miwa L. Record linkages. Eur J Clin Res 1994;6:87-91.

Kluge EH. Advanced patient records: some ethical and legal considerations touching medical information space. Methods Inf Med 1993 Apr;32(2):95-103. Comment in: Methods Inf Med 1993 Apr;32(2):104-7.

Kluge EH. Health information, the fair information principles and ethics. Methods Inf Med 1994 Oct;33(4):336- 45. Comment in: Methods Inf Med 1994 Oct;33(4):348-50.

Lawrence LM. Safeguarding the confidentiality of automated medical information. Jt Comm J Qual Improv 1994 Nov;20(11):639-46.

Lincoln TL. Privacy: a real-world problem with fuzzy boundaries [editorial]. Methods Inf Med 1993 Apr;32(2):104-7. Comment on: Methods Inf Med 1993 Apr;32(2):95-103.

Lincoln TL, Essin DJ. In search of rules for confidentiality: a critique of oneproposal [editorial]. Methods Inf Med 1994 Oct;33(4):348-50. Comment on: Methods Inf Med 1994 Oct;33(4):336-45.

Logan JA 3rd, Hebbeler G. Formatting and presenting quality data to medical staffs and hospital boards. Physician Exec 1994 Oct; 20(10):19-21.

Lousson JP. [Teletransmission, health care and deontology]. Ann Pharm Fr 1995;53(2):79-82. (Fre).

Lowel H, Lewis M, Gostomzyk J, Keil U. [Population-based heart infarct register in the Augsburg region: possibilities and limitations]. Soz Praventivmed 1991;36(3):159-65. (Ger).

Lynge E. European directive on confidential data: a threat to epidemiology [editorial]. BMJ 1994 Feb 19;308(6927):490. Comment on: BMJ 1994 Feb 19;308(6927):522-3.

McClure ML. The uses and abuses of large data sets. J Prof Nurs 1991 Mar-Apr;7(2):72.

Panda SK, Nagabhushanam A. Fuzzy data distortion. Comput Stat Data Anal 1995 May;19(5):553-62.

Reilly PR. Panel comment: the impact of the Genetic Privacy Act on medicine. J Law Med Ethics 1995;23(4):378- 81.

Schrage R. [Cancer register problems--modified reporting law model for the improvement of data protection]. Offentl Gesundheitswes 1991 Nov;53(11):746-52. (Ger).

Ten Ham M. Confidentiality of medical databases and pharmaco-epidemiology. Drug Inf J 1995;29(1):343-49.

Thomas SP. Issues in data management and storage. J Neurosci Nurs 1993 Aug;25(4):243-5.

Tuchsen F, Bach E, Andersen O, Jorgensen J. The use of a national hospital register for hypothesis generation. Inf Serv Use 1990;10(1-2):15-23.

van der Leer OF. The use of personal data for medical research: how to deal with new European privacy standards. Int J Biomed Comput 1994 Feb;35 Suppl:87-95.

Verloove-Vanhorick SP, Brand R. [Perinatal registration: a pilot study of matching of data from the National Obstetrics Registration and the National Neonatology Registration]. Ned Tijdschr Geneeskd 1992 Oct 24;136(43):2127-31. (Dut)

Walsh M, Cortez F. Quality assurance system must balance functionality with data security. Comput Nurs 1991 Jan-Feb;9(1):27-8.

Wan L. The legality of unlinked anonymous screening for HIV infection: the U.S. approach. Health Policy 1990 Jan-Feb;14(1):29-35.

Westrin CG. Ethical, legal, and political problems affecting epidemiology in European countries. IRB 1993 May- Jun;15(3):6-8.