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Protecting Data Privacy in Health Services Research References Amdur, Robert, Speers, Marjorie A., and Bankert, Elizabeth. IRB Triage of Projects that Involve Medical Record Review. In press. Applebaum, Paul S. Threats to the Confidentiality of Medical Records—No Place to Hide. JAMA. 2000 Feb 9; 283(6):795–796. Association of American Medical Colleges. AAMC Comments on The Recommendations of the Secretary of Health and Human Services on the “Confidentiality of Individually Identifiable Health Information.” AAMC Testimony Presented to the Senate Labor and Human Resources Committee. 1997 Nov 10. Association for Health Services Research. Definitions of Health Services Research. 2000. James Bell Associates. Review Draft—Final Report Evaluation of NIH Implementation of Section 491 of the Public Health Service Act, Mandating a Program of Protection of Research Subjects (NO1-OD-2-2109). 1998 May 19. Belmont 1979. The Belmont Report. Office of the Secretary. Ethical Principles and Guidelines for the Protection of Human Subjects of Research. The National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research. 1979 April. Bradburn, Norman M. Population—Based Survey Research. Presentation Done at National Bioethics Advisory Commission. 2000 Apr 6. Brainard, Jeffrey. An Inside Look at How a University Tries to Protect Human Subjects . The Chronicle of Higher Education. 2000 Mar 17: A31. Brooks, John M.; Doucette, William, and Sorofman, Bernard. Factors Affecting Bargaining Outcomes Between Pharmacies and Insurers . Health Service Research Selected Papers From The Association for Health Services Research Annual Meeting, June 21–23, 1998. 1999 Apr; 34(1 Part II):439–451. Brown, June Gibbs, Inspector General. Institutional Review Boards: The Emergence of Independent Boards. Department of Health and Human Services, Office of Inspector General. 1998a Jun.
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Protecting Data Privacy in Health Services Research Brown, June Gibbs, Inspector General. Institutional Review Boards: A Time for Reform. Department of Health and Human Services, Office of Inspector General. 1998b Jun. Brown, June Gibbs, Inspector General. Protecting Human Research Subjects: Status of Recommendations. Department of Health and Human Services, Office of Inspector General. April 2000. Buckovich, Suzy A., Rippen, Helga E., and Rozen, Michael J. Driving Toward Guiding Principles: A Goal for Privacy, Confidentiality, and Security of Health Information. Journal of American Medical Informatics Association. 1999 Mar–1999 Apr 30; 6(2):123–133. California Health Care Foundation. Americans Worry About the Privacy of Their Computerized Medical Reports . California Health Care Foundation: Communication—Press Releases. 1999 Jan 28. Casarett, David; Karlawish Jason H.T., and Sugarman, Jeremy. Determining When Quality Improvement Intiatives Should Be Considered Research: Proposed Criteria and Potential Implications. JAMA. 2000 May 3; 283(17):2275–2280. Chen, J.; Marciniak, T. A.; Radford, M. J.; Wang, Y., and Krumholz, H. M. Beta-blocker therapy for secondary prevention of myocardial infarction in elderly diabetic patients. Results from the National Cooperative Cardiovascular Project. Journal of the American College of Cardiology. 1999 Nov 1; 34(5):1388–1394. Clancy, Carolyn M. and Eisenberg, John M. Outcomes Research; Measuring the End Results of Health Care. Science (Reprint Series). 1998 Oct 9; 282. Cromwell, David M.; Bass, Eric B.; Steinberg, Earl P.; Yasui, Yutaka; Ravich, William J.; Hendrix, Thomas R.; McLeod, Susan F., and Moore, Richard D. Can Restrictions on Reimbursement for Anti-Ulcer Drugs Decrease Medicaid Pharmacy Costs Without Increasing Hospitalizations? Health Services Research; 33(6):1593–1610, 1999. DHHS (Department of Health and Human Services), and Office of the Secretary. Standards for Privacy of Individually Identifiable Health Information; Proposed Rule. Federal Register. 1999 Nov 3; 64(212):59918. Edgar, Harold and Rothman, David J. The Institutional Review Board and Beyond: Future Challenges to the Ethics of Human Experimentation. The Milbank Quarterly. 1995; 73(4):489–506. Eisenberg, John M. Health Services Research In A Market-Oriented Health Care System. Health Affairs Media & Managed Care. 1998 Jan–1998 Feb 28; 17(1). Etzioni, Amitai. Medical Records: Enhancing Privacy, Preserving the Common Good. Hastings Center Report. 1999 Mar–1999 Apr 30: 14–23. General Accounting Office. Medical Records Privacy Access Needed for Health Research, but Oversight of Privacy Protections Is Limited. GAO—Report to Congressional Requesters. 1999 Feb., GAO/HEHS-99-55. General Accounting Office. Scientific Research: Continued Vigilance Critical to protecting Human Subjects. GAO—Report to Ranking Minority Member. 1996 Mar., GAO/HEHS-96-72. GHPP (Health Privacy Working Group). Best Principles for Health Privacy. Health Privacy Project; Institute for Health Care Research and Policy, Georgetown University . 1999. Available online at http://www.healthprivacy.org/latest/Best_Principles_Report.pdf. Goldman, Janlori, and Hudson, Zoe. A Health Privacy Primer for Consumers EXPOSED. Health Privacy Project. Institute for Health Care Research and Policy. Georgetown University . Washington, DC. 1999 Dec. Available online at http://www.healthprivacy.org/resources/exposed.pdf.
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Protecting Data Privacy in Health Services Research Goldman, Janlori. Protecting Privacy To Improve Health Care. Health Affairs. 1998 Nov–1998 Dec 31; 17(64):47–60. Gostin, Lawrence O. and Hadley, Jack. Health Services Research: Public Benefits, Personal Privacy, and Proprietary Interests. Annals of Internal Medicine. 1998 Nov 15; 129(10):833–835. Gostin, Lawrence O., Lazzarini, Zita; Neslund, Verla, and Osterholm, Michael T. The Public Health Information Infrastructure A National Review of the Law on Health Information Privacy. JAMA. 1996 Jun 26; 275(24):1921–1927. Gross, David J.; Alecxih, Lisa; Gibson, Mary Jo; Corea, John; Caplan, Craig, and Brangan, Normandy. Out-of-Pocket Health Spending by Poor and Near-Poor Elderly Medicare Beneficiaries. Health Care Research Selected Papers From the Association For Health Services Research Annual Meeting, June 21–23, 1998. 1999 Apr; 34(1 Part II):241–254. Halamka, John D.; Szolovits, Peter; Rind, David, and Safran, Charles. A WWW Implementation of National Recommendations for Protecting Electronic Health Information. Journal of the American Medical Informatics Association. 1997; 4(6):458–464. Hanken, Mary Alice. Standards for Confidentiality, Privacy, Access, and Data Security . Topics in Health Information Management. 1996 May: 44–48. Iezzoni, Lisa. Ethical Consideration in Future Health Care Research: Protecting Privacy and Related Concerns. Presented at Connecting Ethics and Health Policy, Bethesda, Maryland, Oct 1, 1999. Ivy, Andrew C. Nazi War Crimes of a Medical Nature. Reprinted With Permission of the Editors from Federation Bulletin. 1947; 33:133–146 in Reiser, Stanley J.; Dyke, Arthur J., and Curran, William J. Ethics in Medicine: Historical Perspectives and Contemporary Concerns . MIT Press. 1977. IOM (Institute of Medicine). Committee on Regional Health Data Networks and Molla Donaldson, and Kathleen N. Lohr, editors. Health Data in the Information Age: Use, Disclosure, and Privacy. 1994. Washington, DC: National Academy Press. IOM (Institute of Medicine). Committee on Health Services Research: Training and Work Force Issues and Marilyn J. Field, Robert E. Tranquada and Jill C. Feasley, editors. Health Services Research: Work. Washington, DC: National Academy Press. 1995. ISPE (International Society for Pharmacoepidemiology). Data privacy, medical record confidentiality, and research in the interest of public health. [Web Page]. 1997 Sep 1. Available at: http://www.pharmacoepi.org/policy/privacy.htm. JHITA (Joint Healthcare Information Technology Alliance). Advocacy Paper: Medical Records Confidentiality Legislation [Web Page]. Available at: http://www.jhita.org/medical.htm. Katz, David A. Barriers Between Guidelines and Improved Patient Care: An Analysis of AHCPR's Unstable Angina Clinical Practice Guideline. Health Care Research Selected Papers From the Association For Health Services Research Annual Meeting, June 21–23, 1998. 1999 Apr; 34(1 Part II):377–389. Kohane, Isaac S.; Dong, Hongmei, and Szolovits, Peter. Health Information Identification and De-Identification Toolkit. Proceedings of the American Medical Informatics Association, Symp. 1998; 356–360. Lo, Bernard, and Alpers, Ann. Uses and Abuses of Prescription Drug Information in Pharmacy Benefits Management Programs. JAMA. 2000 Feb 9; 283(6):801–806. Lo, Bernard. Values in Research: What are policy-relevant issues to study: How to do it ethically? Presented at Connecting Ethics and Health Policy, Bethesda, Maryland, Oct 1, 1999.
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Protecting Data Privacy in Health Services Research Lowrance, William W. Privacy and Health Research: A Report to the U.S. Secretary of Health and Human Services. 1997 May. Malenka, D. J.; McGarth, P. D.; Wennberg, D. E.; Ryan, T. J Jr.; Kellett, M. A. Jr.; Shubrooks, S. J. Jr.; Bradley, W. A.; Hettelemen, B. D.; Robb, J. F.; Hearne, M. J.; Silver, T. M.; Watkins, M. W.; O'Meara, J. R.; VerLee, P. N., and O'Rourke, D. J. The relationship between operator volume and outcomes after percutaneous coronary interventions in high volume hospitals in 1994–1996: the northern New England experience. Northern New England Cardiovascular Disease Study Group. Journal of the American College of Cardiology. 1999 Nov 1; 34(5):1471–1480. McCarthy, Douglas B.; Shatin, Deborah; Drinkard, Carol R.; Kleinman, John H., and Gardner, Jacqueline S. Medical Records and Privacy: Empirical Effects on Legislation. HSR: Health Services Research. 1999 Apr; 34 (part II)(1):417–425. Melton, L. Joseph III. The Threat to Medical-Records Research. The New England Journal of Medicine. 1997 Nov 13; 337(20). Norsigian, Judy and Billings, Paul. Privacy and Medical-Records Research. The New England Journal of Medicine. 1998 Apr 9; 338(15). Norton, E. C.; Garfinkel, S. A.; McQuay, L. J.; Heck, D. A.; Wright, JG.; Dittus, R., and Lubitz, R.M. The effect of hospital volume on the in-hospital complication rate in knee replacement patients. Health Services Research. 1998 Dec; 33(5 Pt 1):1191–1210. NRC (National Research Council). Committee on Maintaining Privacy and Security in Health Care Applications of the National Infrastructure, Computer Science and Telecommunications Board, Commission on Physical Sciences, Mathematics and Applications, and National Research Council. For the Record. Protecting Electronic Health Information. Washington, DC: National Academy Press. 1997. NRC (National Research Council) Panel of Confidentiality and Data Access, George T. Duncan, Thomas B. Jabine, and Virginia A. de Wolf, editors. Private Lives and Public Policies Confidentiality and Accessibility of Government Statistics. 1993. O'Brien, Dale G., and Yasnoff, William A. Privacy, Confidentiality, and Security in Information Systems of State Health Agencies. American Journal of Preventive Medicine. 1999; 16(4):351–358. OPRR, National Institute of Health. Intitutional Review Board (IRB) Guidebook, 1993 [Web Page]. 1993. Available at: http://grants.nih.gov/grants/oprr/irb/irb_guidebook.htm. PhRMA. PhRMA Policy Papers: Twin Goals: Privacy and Progress [Web Page]. Available at: http://www.phrma.org/issues/goals.html. Pritts, J.; Goldman, J.; Hudson, Z.; Berenson, A.; and Hadley, E. The State of HealthPrivacy: An Uneven Terrain—A Comprehensive Survey of State Health Privacy Statutes. Health Privacy Project; Institute for Health Care Research and Policy, Georgetown University . 1999. Available online at http://www.healthprivacy.org/resources/statereports/contents.html Shalala, Donna. Confidentiality of Individually Identifiable Health Information, Recommendations of the Secretary of Health and Human Services, pursuant to section 264 of the Health Insurance Portability and Accountability Act of 1996. 1997 Sep 11. Sollano, J. A.; Gelijns, A. C.; Moskowitz, A. J.; Heitjan, D. F.; Cullinane, S.; Saha, T.; Chen, J. M.; Roohan, P. J.; Reemstsma, K.; and Shields, E. P. Volume-outcome relationships in cardiovascular operations: New York State, 1990–1995. Journal of Thoracic Cardiovascular Surgery. 1999 Mar; 117(3):419–428. Sweeney, LaTanya. Weaving Technology and Policy Together to Maintain Confidentiality . Journal of Law, Medicine & Ethics. 1997; 25:98–110.
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Protecting Data Privacy in Health Services Research Ubel, PA; Zell, MM; Miller, DJ; Fischer, GS; Peters-Stefani, D; and Arnold, RM. Elevator talk: observational study of inappropriate comments in a public space. American Journal of Medicine. 1995; 99:190–194. Wolf, Leslie E. and Lo, Bernard. Practicing Safer Research Using the Law to Protect the Confidentiality of Sensitive Research Data. IRB: A Review of Human Subjects Research, 1999; 21(5):4–7 Woodward, Beverly. Challenges to Human Subject Protections in US Medical Research. JAMA. 1999 Nov 24; 282(20):1947–1965. Zito, Julie Magno; Safer, Daniel J.; dosReis, Susan; Gardner, James F.; Boles, Myde, and Lynch, Frances. Trends in the Prescribing of Psychotropic Medications to Preschoolers . JAMA. 2000 Feb 23; 283(8):1025–1030.
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