Influence of the HIPAA privacy rule on health research

JAMA

Volumn 298, Issue 18, 2007, Pages 2164-2170

  Ness, Roberta B ^a,b  

^a UNIVERSITY OF PITTSBURGH   (United States)

^b UNIVERSITY OF PITTSBURGH GRADUATE SCHOOL OF PUBLIC HEALTH   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ARTICLE; CONFIDENTIALITY; COST BENEFIT ANALYSIS; HEALTH INSURANCE; HEALTH INSURANCE PORTABILITY AND ACCOUNTABILITY ACT PRIVACY RULE; HEALTH PROGRAM; HEALTH SURVEY; HUMAN; MEDICAL RESEARCH; PERCEPTION; PRIORITY JOURNAL; PROPHYLAXIS; RATING SCALE; SCIENTIST;

EID: 36148951701     PISSN: 00987484     EISSN: 15383598     Source Type: Journal    
DOI: 10.1001/jama.298.18.2164     Document Type: Article

References (19)

1. Standards for privacy of individually identifiable health information: Final Rule. Fed Regist. 2000; 65(250):82462-82829.
2. Hodge JG Jr, Gostin KG. Challenging themes in American health information privacy and the public's health: historical and modern assessments. J Law Med Ethics. 2004;32(4):670-679.
3. Damschroder LJ, Pritts JL, Neblo MA, Kalarickal RJ, Creswell JW, Hayward RA. Patients, privacy and trust: patients' willingness to allow researchers to access their medical records. Soc Sci Med. 2007;64(1):223-235.
4. Annas GJ. Medical privacy and medical research: judging the new federal regulations. N Engl J Med. 2002;346(3):216-220.
5. Kaiser J. Patient privacy: rule to protect records may doom long-term heart study. Science. 2006;311(5767):1547-1548.
6. Russell S. Medical privacy law said to be chilling cancer studies: scientists fight for fast access to patient files. September 26, 2004. San Francisco Chronicle. http://sfgate.com/cgi-bin/article.cgi?f=/c/a/2004/09/ 26/MNG4J8V7HV1.DTL. Accessed September 28, 2004.
7. Kaiser J. Patient records: privacy rule creates bottleneck for U.S. biomedical researchers. Science. 2004;305(5681):168-169.
8. Health privacy law hinders research. September 14, 2004. Washington Times. http://washingtontimes.com. Accessed September 15, 2004.
9. Tokarski C. HIPAA privacy rule thwarts clinical research recruitment. February 15, 2005. Medscape Medical News. http://www.medscape.com. Accessed February 16, 2005.
10. Smith VA, Fallik D. Doctors, patients grapple with specifics of privacy rule. March 8, 2005. Philadelphia Inquirer. http://nl.newsbank.com/nl- search/we/Archives?p_multi=PI|DN|&p_product=PHNP&p_theme= phnp&p_action=search&p_maxdocs=200&s_trackval=PHNP&s_dispstring= Doctors,%20Patients%20Grapple%20with%20Specifics%20of%20Privacy%20Rule%20& p_field_advanced-0=&p_text_advanced-0=(Doctors, %20Patients%20Grapple%20with%20Specifics%20of%20Privacy%20Rule) &xcal_numdocs=20&p_perpage=10&p_sort=YMD_date:D&xcal_useweights= no. Accessed March 8, 2005.
11. Smith VA, Fallik D. Questions remain 2 years after HIPAA. March 16, 2005. Billings Gazette. http://www.billingsgazette.com/newdex.php?display= rednews/2005/03/16/build/health/50-hipaa.inc. Accessed March 30, 2005.
12. Nosowsky R, Giordano TJ. The Health Insurance Portability and Accountability Act of 1996 (HIPAA) privacy rule: implications for clinical research. Annu Rev Med. 2006;57:575-590.
13. Ness RB. A year is a terrible thing to waste. Ann Epidemiol. 2005;15(2):85-86.
14. Armstrong D, Kline-Rogers E, Jani SM, et al. Potential impact of the HIPAA privacy rule on data collection in a registry of patients with acute coronary syndrome. Arch Intern Med. 2005;165(10):1125-1129.
15. Wolf MSB, Charles L. Local perspective of the impact of the HIPAA privacy rule on research. Cancer. 2006;106(2):474-479.
16. O'Herrin JK, Fost N, Kudsk KA. Health Insurance Portability Accountability Act (HIPAA) regulations. Ann Surg. 2004;239(6):772-778.
17. Herdman R, Moses H. Effect of the HIPAA Privacy Rule on Health Research. Washington, DC: The National Academies Press; 2006.
18. Paasche-Orlow MK, Jacob DM, Powell JN. Notices of notices of privacy practices: a survey of the Health Insurance Portability and Accountability Act of 1996 documents presented to patients at US hospitals. Med Care. 2005;43(6):558-564.
19. Beskow LM, Sandler RS, Weinberger M. Research recruitment through US central cancer registries: balancing privacy and scientific issues. Am J Public Health. 2006;96(11):1920-1926.