Identifying Potential Participants in Research by Using their Confidential Medical Records
Ghareeb Mesawa Bahari, Faculty Member of Nursing College at King Saud University, Riyadh, Saudi Arabia.
Disclosing medical records for the purpose of research has been considered under the priorities of ethics in research. One plausible explanation of this is that disclosing such information without getting permission may cause harm to patients’ emotions and diminish the level of respect to them. Researchers should remember that conducting research on patients and their information needs to meet the ethical requirements. The purpose of this paper was to clarify the significance of ethics in using patients’ medical records for research purposes. An extensive literature review was performed to show the need to understand more about ethics and confidentiality in nursing research from views of other researchers. The way to recruit patients by using their confidential medical records ethically was also explained. Having confidentiality on patients’ medical records requires further investigation in order to promote patients’ rights and ethically conduct research in nursing.
Ethics, Medical Records, Confidentiality, Recruitment, HIPAA, Privacy, Respect, Participant, Disclosure, Consent
Abdur Rab, M., Afzal, M., Abou-Zeid, A., & Silverman, H. (2008). Ethical practices for health research in the Eastern Mediterranean region of the World Health Organization: A retrospective data analysis. Plos One, 3(5), e2094. doi:10.1371/journal.pone.0002094.
American College of Healthcare Executives. (2014). Health information confidentiality. Retrieved from https://www.ache.org/policy/hiconf.cfm
Appari, A. & Johnson, M. E., (2008). Information security and privacy in healthcare: Current state of research. Retrieved from http://www.ists.dartmouth.edu/library/416.pdf
Battistuzzi, L., Ciliberti, R., Forzano, F., & De Stefano, F. (2012). Regulating the communication of genetic risk information: the Italian legal approach to questions of confidentiality and disclosure. Clinical Genetics, 82(3), 205-209. doi:10.1111/j.1399-0004.2012.01935.x
California Healthcare Foundation. (2015). Ethics survey of consumer attitudes about health web sites. Retrieved from http://www.chcf.org/publications/2000/09/ethics-survey-of-consumer-attitudes-about-health-web-sites
Center for Clinical and Translational Science, the Ohio State University. (2012). Screening practices. Retrieved from https://ccts.osu.edu/education-and-training-programs/research-education-and-training-programs/clinical-research-coordinator-resources/screening-practices
Dameron, O., Besana, P., Zekri, O., Bourdé, A., Burgun, A., & Cuggia, M. (2013). OWL model of clinical trial eligibility criteria compatible with partially-known information. Journal of Biomedical Semantics, 4(1), 17. doi:10.1186/2041-1480-4-17.
Department of Health and Human Services. (1997). Assistant Secretary for legislation. Retrieved from http://www.hhs.gov/asl/testify/t970508b.html
Electronic Privacy Information Center. (2015). Legislative survey of state confidentiality laws, with specific emphasis on HIV and immunization. Retrieved from https://epic.org/privacy/medical/cdc_survey.html
Emanuel, E., Grady, C.C., Crouch, R.A., Lie, R.A., Miller, F.G., & Windler, D.D. (2011). The oxford textbook of clinical research ethics. New York: Oxford University Press.
Goldstein, M. M., & Pewen, W. F. (2013). The HIPAA omnibus rule: Implications for public health policy and practice. Public Health Reports (Washington, D.C.: 1974), 128(6), 554-558.
Jones, D. J. (2007). Interface of law and ethics in Canadian research ethics standards: An avisory opinion on confidentiality, its limits and duties to others. Retrieved from https://www.mcgill.ca/healthlaw/files/healthlaw/Jones_Limits_Confidentiality_MJLH07.pdf
Kahn, J. P. (2007). Beyond disclosure: the necessity of trust in biomedical research. Cleveland Clinic Journal of Medicine, 74 Suppl 2S49.
National Institutes of Health. (2005). Health services research and the HIPAA privacy rule. Retrieved from http://privacyruleandresearch.nih.gov/pdf/HealthServices ResearchHIPAAPrivacyRule.pdf
Rodriguez, L. (2011). Privacy, security and electronic health records. Retrieved from http://www.healthit.gov/buzz-blog/privacy-and-security-of-ehrs/privacy-security-electronic-health-records/
Schwab, A. P., Frank, L., & Gligorov, N. (2011). Saying privacy, meaning confidentiality. 17. The American Journal of Bioethics: AJOB, 11(11), 44-45. doi:10.1080/15265161.2011.608243.
Steward, M. (2005). Electronic medical records. Privacy, confidentiality, liability. The Journal of Legal Medicine, 26(4), 491-506.
Stewart, R. F., Kroth, P. J., Schuyler, M., & Bailey, R. (2010). Do electronic health records affect the patient-psychiatrist relationship? A before & after study of psychiatric outpatients. BMC Psychiatry, 103. doi:10.1186/1471-244X-10-3.
University of California San Francisco. (2015). How we may use and disclose your medical information. Retrieved from http://www.ucsfhealth.org/hipaa/how_we_may_use_and_ disclose_medical_information_about_you/#12
Van Spall, H. C., Toren, A., Kiss, A., & Fowler, R. A. (2007). Eligibility criteria of randomized controlled trials published in high-impact general medical journals: A systematic sampling review. Jama, 297(11), 1233-1240.
Weatherall, D., Greenwood, B., Chee, H. L., & Wasi, P. (2006). Science and Technology for Disease Control: Past, Present, and Future (2nd edition). Washington (DC): World Bank.