Don't take your EHR to heaven, donate it to science: Legal and research policies for EHR post mortem

Journal of the American Medical Informatics Association

Volumn 21, Issue 1, 2014, Pages 8-12

  Huser, Vojtech ^a   Cimino, James J ^a  

^a NATIONAL INSTITUTES OF HEALTH   (United States)

Author keywords

[No Author keywords available]

Indexed keywords

ACCREDITATION; ARTICLE; CLINICAL DATA REPOSITORY; CLINICAL RESEARCH; CONFIDENTIALITY; DATA BASE; DEATH; ELECTRONIC MEDICAL RECORD; HEALTH CARE PERSONNEL; HEALTH CARE POLICY; HEALTH INSURANCE; HUMAN; INFORMED CONSENT; INSTITUTIONAL REVIEW; INTEGRATED DATA REPOSITORY; INTERPERSONAL COMMUNICATION; LEGAL LIABILITY; MEDICAL DOCUMENTATION; MEDICAL ETHICS; MEDICAL INFORMATICS; MEDICAL INFORMATION; MEDICOLEGAL ASPECT; PATIENT CODING; PROTECTED HEALTH INFORMATION; SAMPLE SIZE; SCIENTIST;

ELECTRONIC HEALTH RECORD; INSTITUTIONAL REVIEW BOARD; INTEGRATED DATA REPOSITORY; POST MORTEM; PRIVACY; RESEARCH POLICY;

BIOMEDICAL RESEARCH; CONFIDENTIALITY; DATABASES AS TOPIC; DEATH; ELECTRONIC HEALTH RECORDS; GOVERNMENT REGULATION; HUMANS; UNITED STATES;

EID: 84890448964     PISSN: 10675027     EISSN: 1527974X     Source Type: Journal    
DOI: 10.1136/amiajnl-2013-002061     Document Type: Article

References (23)

1. Mackenzie SL, Wyatt MC, Schuff R, et al. Practices and perspectives on building integrated data repositories: results from a 2010 CTSA survey. J Am Med Inform Assoc 2012;19:e119-24.
2. Hripcsak G, Albers DJ. Next-generation phenotyping of electronic health records. J Am Med Inform Assoc 2013;20:117-21.
3. Greene SM, Reid RJ, Larson EB. Implementing the learning health system: from concept to action. Ann Intern Med 2012;157:207-10.
4. Murdoch Tb DAS. THe inevitable application of big data to health care. JAMA 2013;309:1351-2.
5. Tannen RL, Weiner MG, Xie D. Use of primary care electronic medical record database in drug efficacy research on cardiovascular outcomes: comparison of database and randomised controlled trial findings. BMJ 2009;338:b81.
6. Neuhauser D, Morrissey M, Votruba M. Your human subjects review process: a road block or a competitive advantage? J Clinic Res Bioeth 2012;3:130.
7. Brothers KB, Clayton EW. "Human non-subjects research": privacy and compliance. Am J Bioeth 2010;10:15-17.
8. Columbia University: Research Data Explorer (RedX). http://ps.columbia.edu/CERS/ toolkit-exploratory-research
9. Roden DM, Pulley JM, Basford MA, et al. Development of a large-scale deidentified DNA biobank to enable personalized medicine. Clin Pharmacol Ther 2008;84:362-9.
10. El Emam K, Jonker E, Arbuckle L, et al. A systematic review of re-identification attacks on health data. PloS One 2011;6:e28071.
11. Electronic Code of Federal Regulations: Title 45: §164.512 Uses and disclosures for which an authorization or opportunity to agree or object is not required. http://www. ecfr.gov/cgi-bin/retrieveECFR?SID=0c83756f3a487d6d70dd3232e084c0a0&n=45y1. 0.1.3.78.5&r=SUBPART&ty=HTML#45:1.0.1.3.78.5.27.8
12. Healthcare Cost and Utilization Project (HCUP) Statistical Briefs. 2006. http://www.ncbi.nlm.nih.gov/pubmed/21413206.
13. CMS Chronic Condition Data Warehouse: Technical Guidance Documentation. http://www.ccwdata.org/web/guest/technical-guidance-documentation.
14. Office of Cilivil Rights: Guidance Regarding Methods for De-identification of PHI in Accordance with HIPAA. 2012. http://www.hhs.gov/ocr/privacy/hipaa/understanding/ coveredentities/De-identification/hhs_deid_guidance.pdf.
15. eRA Commons Overview. http://era.nih.gov/about_era/overview_eRA.cfm
16. How Many People Have Ever Lived on Earth? http://www.prb.org/Articles/2002/ HowManyPeopleHaveEverLivedonEarth.aspx.
17. Curtin C. Do living people outnumber the dead? Sci Am 2007;297:126.
18. Hill MA, Rosenwaike I. The social security administration's death master file: the completeness of death reporting at older ages. Soc Security Bull 2001;64:45.
19. Office of Inspector General: Personaly Identifiable Information Made Available to the General Public via the Death Master File (June 2008) (A-06-08-18042). http:// web.timesrecordnews.com/online_forms/Deathfile.pdf
20. Lash TL, Silliman RA. A comparison of the National Death Index and Social Security Administration databases to ascertain vital status. Epidemiology 2001;12:259-61.
21. Publicly available and legaly posted Social Security Death Master File (unmodified November 2011 copy). http://ssdmf.info
22. HealthVault Terms of Service. 2013. https://account.healthvault.com/help.aspx? topicid=serviceagreement
23. Critchley CR, Nicol D, Otlowski MF, et al. Predicting intention to biobank: a national survey. Eur J Public Health 2012;22:139-44.