Using Secondary Health Data in Research
DOI:
https://doi.org/10.18034/mjmbr.v8i1.544Keywords:
Electronic health record, medical informatics, data mining, genetic exceptionalism, data protectionAbstract
The use of data in medical research that was originally collected for different purposes, known as secondary data, is an effective way to conduct reliable and cost-effective studies so as to progress knowledge in medicine. A number of serious practical, ethical and legal issues and concerns about this process exist, however. Ensuring a high level of data quality is imperative to produce reliable results, and researchers may face accessibility problems. Projects designed to alleviate these issues are underway, however, lowering the cost and increasing the access to secondary data even further. Although secondary data is de-identified to protect the confidentiality, ethical problems of individual rights versus the benefit of society persist, leading some to call for a new ‘macroethics’ surrounding data use. Legislation to this end has been introduced in many countries, but issues relating to the exemptions it offers and its interpretability remain. To ensure that the use of secondary data in medical research can continue to accelerate the pace of development in medicine, a global effort involving technological and ethical standardization needs to be developed.
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Aamot, H., Kohl, C. D., Richter, D., & Knaup-Gregori, P. (2013). Pseudonymization of patient identifiers for translational research. BMC medical informatics and decision making, 13(1), 75. DOI: https://doi.org/10.1186/1472-6947-13-75
Aita, M., & Richer, M. C. (2005).Essentials of research ethics for healthcare professionals. Nursing & health sciences, 7(2), 119-125. DOI: https://doi.org/10.1111/j.1442-2018.2005.00216.x
Ballantyne, A. (2019). Adjusting the focus: a public health ethics approach to data research. Bioethics, 33(3), 357-366. DOI: https://doi.org/10.1111/bioe.12551
Ballantyne, A., & Schaefer, G. O. (2017). Consent and the ethical duty to participate in health data research. Journal of medical ethics, 44(6), 392-396. DOI: https://doi.org/10.1136/medethics-2017-104550
Beck, C. T. (2019). Secondary qualitative data analysis in the health and social sciences. Routledge. DOI: https://doi.org/10.4324/9781315098753
Benaloh, J., Chase, M., Horvitz, E., & Lauter, K. (2009). Patient controlled encryption: ensuring privacy of electronic medical records. In Proceedings of the 2009 ACM workshop on Cloud computing security (pp. 103-114). DOI: https://doi.org/10.1145/1655008.1655024
Berger, M. L., Mamdani, M., Atkins, D., & Johnson, M. L. (2009). Good research practices for comparative effectiveness research: defining, reporting and interpreting nonrandomized studies of treatment effects using secondary data sources: the ISPOR Good Research Practices for Retrospective Database Analysis Task Force Report—Part I. Value in Health, 12(8), 1044-1052. DOI: https://doi.org/10.1111/j.1524-4733.2009.00600.x
Bhaskar, S. B., & Manjuladevi, M. (2016). Methodology for research II. Indian journal of anaesthesia, 60(9), 646–651. https://doi.org/10.4103/0019-5049.190620 DOI: https://doi.org/10.4103/0019-5049.190620
Black, N. (2003). Secondary use of personal data for health and health services research: why identifiable data are essential. Journal of health services research & policy, 8(1_suppl), 36-40. DOI: https://doi.org/10.1258/135581903766468873
Boslaugh, S. (2007). An introduction to secondary data analysis. Secondary data sources for public health: A practical guide, 2-10. DOI: https://doi.org/10.1017/CBO9780511618802.002
Botsis, T., Hartvigsen, G., Chen, F., & Weng, C. (2010). Secondary use of EHR: data quality issues and informatics opportunities. Summit on Translational Bioinformatics, 2010, 1.
Brakewood, B., & Poldrack, R. A. (2013). The ethics of secondary data analysis: Considering the application of Belmont principles to the sharing of neuroimaging data. Neuroimage, 82, 671-676. DOI: https://doi.org/10.1016/j.neuroimage.2013.02.040
Brown, I., Brown, L., & Korff, D. (2010). Using NHS patient data for research without consent. Law, Innovation and Technology, 2(2), 219-258. DOI: https://doi.org/10.5235/175799610794046186
Burton, P. R., Banner, N., Elliot, M. J., Knoppers, B. M., & Banks, J. (2017). Policies and strategies to facilitate secondary use of research data in the health sciences. DOI: https://doi.org/10.1093/ije/dyx195
Castle, J. E. (2003). Maximizing research opportunities: Secondary data analysis. Journal of Neuroscience Nursing, 35(5), 287. DOI: https://doi.org/10.1097/01376517-200310000-00008
Cheng, H. G., & Phillips, M. R. (2014). Secondary analysis of existing data: opportunities and implementation. Shanghai archives of psychiatry, 26(6), 371.
Coughlin, S. S. (2006). Ethical issues in epidemiologic research and public health practice. Emerging themes in epidemiology, 3(1), 16. DOI: https://doi.org/10.1186/1742-7622-3-16
Cox, E., Martin, B. C., Van Staa, T., Garbe, E., Siebert, U., & Johnson, M. L. (2009). Good research practices for comparative effectiveness research: approaches to mitigate bias and confounding in the design of nonrandomized studies of treatment effects using secondary data sources: the International Society for Pharmacoeconomics and Outcomes Research Good Research Practices for Retrospective Database Analysis Task Force Report—Part II. Value in Health, 12(8), 1053-1061. DOI: https://doi.org/10.1111/j.1524-4733.2009.00601.x
Demchenko, Y., Grosso, P., De Laat, C., & Membrey, P. (2013, May). Addressing big data issues in scientific data infrastructure. In 2013 International Conference on Collaboration Technologies and Systems (CTS) (pp. 48-55). IEEE. DOI: https://doi.org/10.1109/CTS.2013.6567203
Dolley, S. (2018). Big data’s role in precision public health. Frontiers in public health, 6, 68. DOI: https://doi.org/10.3389/fpubh.2018.00068
Edwards, L., & Harbina, E. (2013). Protecting post-mortem privacy: Reconsidering the privacy interests of the deceased in a digital world. Cardozo Arts & Ent. LJ, 32, 83. DOI: https://doi.org/10.2139/ssrn.2267388
El Emam, K., Rodgers, S., & Malin, B. (2015). Anonymising and sharing individual patient data. bmj, 350, h1139. DOI: https://doi.org/10.1136/bmj.h1139
Endriyas, M., Alano, A., Mekonnen, E., Ayele, S., Kelaye, T., Shiferaw, M., & Hailu, S. (2019). Understanding performance data: health management information system data accuracy in Southern Nations Nationalities and People’s Region, Ethiopia. BMC health services research, 19(1), 175. DOI: https://doi.org/10.1186/s12913-019-3991-7
Floridi L. & Taddeo M. (2016). What is data ethics? Philosophical Transactions of the Royal Society A: Mathematical, Physical and Engineering Sciences, 374 doi.org/10.1098/rsta.2016.0360
Floridi, L., Luetge, C., Pagallo, U., Schafer, B., Valcke, P., Vayena, E., & Vannieuwenhuyse, B. (2019). Key ethical challenges in the European medical information framework. Minds and Machines, 29(3), 355-371. DOI: https://doi.org/10.1007/s11023-018-9467-4
Foley, B., Shuttleworth, I., & Martin, D. (2018). Administrative data quality: Investigating record-level address accuracy in the Northern Ireland Health Register. Journal of Official Statistics, 34(1), 55-81. DOI: https://doi.org/10.1515/jos-2018-0004
Francis, B. (2020). General Data Protection Regulation (GDPR) and Data Protection Act 2018: What does this mean for clinicians?. Archives of Disease in Childhood-Education and Practice. DOI: https://doi.org/10.1136/archdischild-2018-316057
Frunză, A., & Sandu, A. (2017). Ethical acceptability of using generic consent for secondary use of data and biological samples in medical research. Acta bioethica, 23(2).
Gatignon, H. (2019). Ethical behaviours versus behaviours that contravene deontological research principles in the publishing process. Recherche et Applications en Marketing (English Edition), 34(2), 63-74. DOI: https://doi.org/10.1177/2051570718815973
Godard, B., Schmidtke, J., Cassiman, J. J., & Aymé, S. (2003). Data storage and DNA banking for biomedical research: informed consent, confidentiality, quality issues, ownership, return of benefits. A professional perspective. European Journal of Human Genetics, 11(2), S88-S122 DOI: https://doi.org/10.1038/sj.ejhg.5201114
Goroff, D., Polonetsky, J., & Tene, O. (2018). Privacy protective research: Facilitating ethically responsible access to administrative data. The ANNALS of the American Academy of Political and Social Science, 675(1), 46-66. DOI: https://doi.org/10.1177/0002716217742605
Graves, A., McLaughlin, D., Leung, J., & Powers, J. (2019). Consent to data linkage in a large online epidemiological survey of 18–23 year old Australian women in 2012–13. BMC Medical Research Methodology, 19(1), 235. DOI: https://doi.org/10.1186/s12874-019-0880-z
Gray, K., & Schein, C. (2012). Two minds vs. two philosophies: Mind perception defines morality and dissolves the debate between deontology and utilitarianism. Review of Philosophy and Psychology, 3(3), 405-423.
Grinyer, A. (2009). The ethics of the secondary analysis and further use of qualitative data. Social Research Update, 56(4), 1-4.
Hagger‐Johnson, G., Harron, K., Gonzalez‐Izquierdo, A., Cortina‐Borja, M., Dattani, N., Muller‐Pebody, B., & Goldstein, H. (2015). Identifying possible false matches in anonymized hospital administrative data without patient identifiers. Health services research, 50(4), 1162-1178. DOI: https://doi.org/10.1111/1475-6773.12272
Haley, V. B., Van Antwerpen, C., Tserenpuntsag, B., Gase, K. A., Hazamy, P., Doughty, D., & Stricof, R. L. (2012). Use of administrative data in efficient auditing of hospital-acquired surgical site infections, New York State 2009–2010. Infection Control & Hospital Epidemiology, 33(6), 565-571. DOI: https://doi.org/10.1086/665710
Hammond, W. E., Jaffe, C., & Kush, R. D. (2009). Healthcare standards development: The value of nurturing collaboration. Journal of AHIMA, 80(7), 44-50.
Harpe, S. E. (2009). Using secondary data sources for pharmacoepidemiology and outcomes research. Pharmacotherapy: The Journal of Human Pharmacology and Drug Therapy, 29(2), 138-153. DOI: https://doi.org/10.1592/phco.29.2.138
Harsh, R., Acharya, G., & Chaudhary, S. (2018). Epistemological View: Data Ethics, Privacy & Trust on Digital Platform. In 2018 IEEE International Conference on System, Computation, Automation and Networking (ICSCA) (pp. 1-6). IEEE. DOI: https://doi.org/10.1109/ICSCAN.2018.8541166
Hasan, S., & Padman, R. (2006). Analyzing the effect of data quality on the accuracy of clinical decision support systems: a computer simulation approach. In AMIA annual symposium proceedings (Vol. 2006, p. 324). American Medical Informatics Association.
Herbert, A, Wijlaars, L, Zylbersztejn, A, Cromwell, D, Hardelid, P. (2017). Data Resource Profile: Hospital Episode Statistics Admitted Patient Care (HES APC). International Journal of Epidemiology. Aug; 46(4):1093-1093i. DOI: 10.1093/ije/dyx015. DOI: https://doi.org/10.1093/ije/dyx015
Herschel, R., & Miori, V. M. (2017). Ethics & big data. Technology in Society, 49, 31-36. DOI: https://doi.org/10.1016/j.techsoc.2017.03.003
Heurix, J., & Neubauer, T. (2011). Privacy-preserving storage and access of medical data through pseudonymization and encryption. In International Conference on Trust, Privacy and Security in Digital Business (pp. 186-197). Springer, Berlin, Heidelberg. DOI: https://doi.org/10.1007/978-3-642-22890-2_16
Holzer, K., & Gall, W. (2011). Utilizing IHE-based electronic health record systems for secondary use. Methods of information in medicine, 50(04), 319-325. DOI: https://doi.org/10.3414/ME10-01-0060
Hudson, K. L., & Collins, F. S. (2015). Bringing the common rule into the 21st century. New England Journal of Medicine, 373(24), 2293-2296. DOI: https://doi.org/10.1056/NEJMp1512205
Huston, P., & Naylor, C. D. (1996). Health services research: reporting on studies using secondary data sources. CMAJ: Canadian Medical Association Journal, 155(12), 1697.
Iacono, L. L. (2007). Multi-centric universal pseudonymisation for secondary use of the EHR. Studies in health technology and informatics, 126, 239.
Iezzoni, L. I. (1997). Assessing quality using administrative data. Annals of internal medicine, 127(8_Part_2), 666-674. DOI: https://doi.org/10.7326/0003-4819-127-8_Part_2-199710151-00048
Information Commissioners Office (ICO). Exemptions. (2020). Retrieved 10/03/2020 from https://ico.org.uk/for-organisations/guide-to-data-protection/guide-to-the-general-data-protection-regulation-gdpr/exemptions/
Iversen, A., Liddell, K., Fear, N., Hotopf, M., & Wessely, S. (2006). Consent, confidentiality, and the data protection act. Bmj, 332(7534), 165-169.
Johnston, M. P. (2014). Secondary data analysis: A method of which the time has come. Qualitative and quantitative methods in libraries, 3(3), 619-626.
Juddoo, S., & George, C. (2018). Discovering the most important data quality dimensions in health big data using latent semantic analysis. IEEE International Conference on Advances in Big Data, Computing and Data Communication Systems (icABCD) Durban, South Africa, 6-7 August 2018
Kahn, M. G., Callahan, T. J., Barnard, J., Bauck, A. E., Brown, J., Davidson, B. N., ... & Liaw, S. T. (2016). A harmonized data quality assessment terminology and framework for the secondary use of electronic health record data. Egems, 4(1) DOI: https://doi.org/10.13063/2327-9214.1244
Kalkman, S., Mostert, M., Gerlinger, C., van Delden, J. J., & van Thiel, G. J. (2019). Responsible data sharing in international health research: a systematic review of principles and norms. BMC medical ethics, 20(1), 21. DOI: https://doi.org/10.1186/s12910-019-0359-9
Kaplan, B. (2014). How Should Health Data Be Used?: Privacy, Secondary Use, and Big Data Sales. Cambridge Quarterly of Healthcare Ethics, 25(2), 312-329. DOI: https://doi.org/10.1017/S0963180115000614
Lafoz, M. C., Ramírez-Soriano, A., & Richardson, S. (2018). Anonymisation: A new challenge for medical writers. Medical Writing, 27, 31-36.
Lambert, T. W., Soskolne, C. L., Bergum, V., Howell, J., & Dossetor, J. B. (2003). Ethical perspectives for public and environmental health: fostering autonomy and the right to know. Environmental Health Perspectives, 111(2), 133-137. DOI: https://doi.org/10.1289/ehp.4477
Langarizadeh, M., Orooji, A., & Sheikhtaheri, A. (2018). Effectiveness of Anonymization Methods in Preserving Patients' Privacy: A Systematic Literature Review. In eHealth (pp. 80-87).
Lawlor, D. A., & Stone, T. (2001). Public health and data protection: an inevitable collision or potential for a meeting of minds?. DOI: https://doi.org/10.1093/ije/30.6.1221
Lowrance, W. (2003). Learning from experience: privacy and the secondary use of data in health research. Journal of health services research & policy, 8(1_suppl), 2-7. DOI: https://doi.org/10.1258/135581903766468800
Martin-Sanchez, F. J., Aguiar-Pulido, V., Lopez-Campos, G. H., Peek, N., & Sacchi, L. (2017). Secondary use and analysis of big data collected for patient care. Yearbook of medical informatics, 26(01), 28-37. DOI: https://doi.org/10.15265/IY-2017-008
Mazeikiene, S., Stasiuniene, J., Vasiljevaite, D., Laima, S., Chmieliauskas, S., Fomin, D., & Jasulaitis, A. (2020). Deontological examination as a criterion for the assessment of personal healthcare professional quality: A Strobe compliant retrospective study. Medicine, 99(3), e18770. DOI: https://doi.org/10.1097/MD.0000000000018770
McLennan, S., Shaw, D., & Celi, L. A. (2018). The challenge of local consent requirements for global critical care databases. Intensive care medicine, 45(2), 246-248. DOI: https://doi.org/10.1007/s00134-018-5257-y
Mészáros, J., & Ho, C. H. (2018). Big data and scientific research: the secondary use of personal data under the research exemption in the GDPR. Hungarian Journal of Legal Studies, 59(4), 403-419. DOI: https://doi.org/10.1556/2052.2018.59.4.5
Morrow, V., Boddy, J., & Lamb, R. (2014). The ethics of secondary data analysis: Learning from the experience of sharing qualitative data from young people and their families in an international study of childhood poverty.
Motulsky, A., Weir, D. L., Couture, I., Sicotte, C., Gagnon, M. P., Buckeridge, D. L., & Tamblyn, R. (2018). Usage and accuracy of medication data from nationwide health information exchange in Quebec, Canada. Journal of the American Medical Informatics Association, 25(6), 722-729. DOI: https://doi.org/10.1093/jamia/ocy015
Mourby, M., Mackey, E., Elliot, M., Gowans, H., Wallace, S. E., Bell, J., & Kaye, J. (2018). Are ‘pseudonymised’data always personal data? Implications of the GDPR for administrative data research in the UK. Computer Law & Security Review, 34(2), 222-233. DOI: https://doi.org/10.1016/j.clsr.2018.01.002
Nass, S. J., Levit, L. A., & Gostin, L. O. (2009). The value, importance, and oversight of health research. In Beyond the HIPAA privacy rule: enhancing privacy, improving health through research. National Academies Press (US).
National Academy of Sciences (US), N. (2009). Promoting the Stewardship of Research Data. Retrieved 11 March 2020, from: https://www.ncbi.nlm.nih.gov/books/NBK215270/?report=reader.
National Data Guardian for Health and Care’s Review of Data Security, Consent and Opt-Outs. (2016). Retrieved 11 March 2020, from: https://assets.publishing.service.gov.uk/government/uploads/system/uploads/attachment_data/file/535024/data-security-review.PDF.
Neubauer, T., & Heurix, J. (2011). A methodology for the pseudonymization of medical data. International journal of medical informatics, 80(3), 190-204. DOI: https://doi.org/10.1016/j.ijmedinf.2010.10.016
Neumann, P. J., Sanders, G. D., Russell, L. B., Siegel, J. E., & Ganiats, T. G. (Eds.). (2016). Cost-effectiveness in health and medicine. Oxford University Press. DOI: https://doi.org/10.1093/acprof:oso/9780190492939.001.0001
Nikiforova, A. (2019). Analysis of Open Health Data Quality Using Data Object-Driven Approach to Data Quality Evaluation: Insights from a Latvian Context. In IADIS International Conference e-Health (pp. 119-126). DOI: https://doi.org/10.33965/eh2019_201910L015
Peabody, J. W., Luck, J., Jain, S., Bertenthal, D., & Glassman, P. (2004). Assessing the accuracy of administrative data in health information systems. Medical care, 1066-1072. DOI: https://doi.org/10.1097/00005650-200411000-00005
Pezoulas, V. C., Kourou, K. D., Kalatzis, F., Exarchos, T. P., Venetsanopoulou, A., Zampeli, E., & Fotiadis, D. I. (2019). Medical data quality assessment: On the development of an automated framework for medical data curation. Computers in biology and medicine, 107, 270-283. DOI: https://doi.org/10.1016/j.compbiomed.2019.03.001
Pieper, P. (2008). Ethical perspectives of children's assent for research participation: deontology and utilitarianism. Pediatric nursing, 34(4), 319-324.
Ploug, T., & Holm, S. (2015). Meta consent: a flexible and autonomous way of obtaining informed consent for secondary research. Bmj, 350, h2146. DOI: https://doi.org/10.1136/bmj.h2146
Pommerening, K., & Reng, M. (2004). Secondary use of the EHR via pseudonymisation. Studies in health technology and informatics, 441-446.
Pormeister, K. (2017). Genetic data and the research exemption: is the GDPR going too far?. International Data Privacy Law. DOI: https://doi.org/10.1093/idpl/ipx006
Porsdam Mann, S., Savulescu, J., & Sahakian, B. J. (2016). Facilitating the ethical use of health data for the benefit of society: Electronic health records, consent and the duty of easy rescue. Philosophical Transactions of the Royal Society A: Mathematical, Physical and Engineering Sciences, 374(2083), 20160130.
Prada-Ramallal, G., Takkouche, B., & Figueiras, A. (2019). Bias in pharmacoepidemiologic studies using secondary health care databases: a scoping review. BMC medical research methodology, 19(1), 53. DOI: https://doi.org/10.1186/s12874-019-0695-y
Price, W. N., & Cohen, I. G. (2019). Privacy in the age of medical big data. Nature medicine, 25(1), 37-43. DOI: https://doi.org/10.1038/s41591-018-0272-7
Quan, H., Sundararajan, V., Halfon, P., Fong, A., Burnand, B., Luthi, J. C., & Ghali, W. A. (2005). Coding algorithms for defining comorbidities in ICD-9-CM and ICD-10 administrative data. Medical care, 1130-1139. DOI: https://doi.org/10.1097/01.mlr.0000182534.19832.83
Resnik, D. B. (2015). Paternalism and utilitarianism in research with human participants. Health Care Analysis, 23(1), 19-31. DOI: https://doi.org/10.1007/s10728-012-0233-0
Ross, M. W., Iguchi, M. Y., & Panicker, S. (2018). Ethical aspects of data sharing and research participant protections. American Psychologist, 73(2), 138. DOI: https://doi.org/10.1037/amp0000240
Rumbold B, Lewis G and Bardsley M (2011) Access to person-level data in health care: Understanding information governance. Research summary. Nuffield Trust. Retrieved 11 March 2020, from https://www.nuffieldtrust.org.uk/research/access-to-person-level-data-in-health-care-understanding-information-governance?gclid=Cj0KCQjw0pfzBRCOARIsANi0g0sAyThacXsmmIihOKclVFN3vnNmeI0PaC9H2WMQjymqiGWYkD6n3CUaAkuoEALw_wcB
Safran, C., Bloomrosen, M., Hammond, W. E., Labkoff, S., Markel-Fox, S., Tang, P. C., & Detmer, D. E. (2007). Toward a national framework for the secondary use of health data: an American Medical Informatics Association White Paper. Journal of the American Medical Informatics Association, 14(1), 1-9. DOI: https://doi.org/10.1197/jamia.M2273
Schlegel, D. R., & Ficheur, G. (2017). Secondary use of patient data: review of the literature published in 2016. Yearbook of medical informatics, 26(01), 68-71. DOI: https://doi.org/10.15265/IY-2017-032
Singleton, P., & Wadsworth, M. (2006). Consent for the use of personal medical data in research. Bmj, 333(7561), 255-258.
Somolinos, R., Muñoz, A., Hernando, M. E., Pascual, M., Cáceres, J., Sánchez-de-Madariaga, R., & Salvador, C. H. (2014). Service for the pseudonymization of electronic healthcare records based on ISO/EN 13606 for the secondary use of information. IEEE journal of biomedical and health informatics, 19(6), 1937-1944. DOI: https://doi.org/10.1109/JBHI.2014.2360546
Stalla-Bourdillon, Sophie, & Knight, Alison. (2016). Anonymous data v. personal data - a false debate: An EU perspective on anonymization, pseudonymization and personal data. Wisconsin International Law Journal, 34(2), 322.
Strong, D. M., Lee, Y. W., & Wang, R. Y. (1997). Data quality in context. Communications of the ACM, 40(5), 103-110. DOI: https://doi.org/10.1145/253769.253804
Sweeney, L. (2002). k-anonymity: A model for protecting privacy. International Journal of Uncertainty, Fuzziness and Knowledge-Based Systems, 10(05), 557-570. DOI: https://doi.org/10.1142/S0218488502001648
Takahashi, A., Kumamaru, H., Tomotaki, A., Matsumura, G., Fukuchi, E., Hirata, Y., & Miyata, H. (2018). Verification of data accuracy in Japan congenital cardiovascular surgery database including its postprocedural complication reports. World Journal for Pediatric and Congenital Heart Surgery, 9(2), 150-156. DOI: https://doi.org/10.1177/2150135117745871
Taleb, I., El Kassabi, H. T., Serhani, M. A., Dssouli, R., & Bouhaddioui, C. (2016). Big data quality: A quality dimensions evaluation. In 2016 Intl IEEE Conferences on Ubiquitous Intelligence & Computing, Advanced and Trusted Computing, Scalable Computing and Communications, Cloud and Big Data Computing, Internet of People, and Smart World Congress (UIC/ATC/ScalCom/CBDCom/IoP/SmartWorld) (pp. 759-765). IEEE. DOI: https://doi.org/10.1109/UIC-ATC-ScalCom-CBDCom-IoP-SmartWorld.2016.0122
Taylor, P. (2013). Caldicott 2 and patient data. BMJ 2013; 346: f2260 DOI: https://doi.org/10.1136/bmj.f2260
Tenenbaum, J. D., Avillach, P., Benham-Hutchins, M., Breitenstein, M. K., Crowgey, E. L., Hoffman, M. A., & Ray, B. (2017). An informatics research agenda to support precision medicine: seven key areas. Journal of the American Medical Informatics Association, 23(4), 791-795. DOI: https://doi.org/10.1093/jamia/ocv213
Thomson, D., Bzdel, L., Golden-Biddle, K., Reay, T., & Estabrooks, C. A. (2005). Central questions of anonymization: A case study of secondary use of qualitative data. In Forum Qualitative Sozialforschung/Forum: Qualitative Social Research (Vol. 6, No. 1).
Tripathy, J. P. (2013). Secondary data analysis: Ethical issues and challenges. Iranian journal of public health, 42(12), 1478.
Tu, K., Campbell, N. R., Chen, Z. L., Cauch-Dudek, K. J., & McAlister, F. A. (2007). Accuracy of administrative databases in identifying patients with hypertension. Open medicine, 1(1), e18.
Van Mourik, M. S., van Duijn, P. J., Moons, K. G., Bonten, M. J., & Lee, G. M. (2015). Accuracy of administrative data for surveillance of healthcare-associated infections: a systematic review. BMJ open, 5(8), e008424. DOI: https://doi.org/10.1136/bmjopen-2015-008424
Vartanian, T. P. (2010). Secondary data analysis. Oxford University Press. DOI: https://doi.org/10.1093/acprof:oso/9780195388817.001.0001
Verheul, E. R., Jacobs, B., Meijer, C., Hildebrandt, M., & de Ruiter, J. (2016). Polymorphic Encryption and Pseudonymisation for Personalised Healthcare. IACR Cryptology ePrint Archive, 2016, 411.
Weiskopf, N. G., & Weng, C. (2013). Methods and dimensions of electronic health record data quality assessment: enabling reuse for clinical research. Journal of the American Medical Informatics Association, 20(1), 144-151. DOI: https://doi.org/10.1136/amiajnl-2011-000681
Weiskopf, N. G., Hripcsak, G., Swaminathan, S., & Weng, C. (2013). Defining and measuring completeness of electronic health records for secondary use. Journal of biomedical informatics, 46(5), 830-836. DOI: https://doi.org/10.1016/j.jbi.2013.06.010
Wilkerson, M. L., Henricks, W. H., Castellani, W. J., Whitsitt, M. S., & Sinard, J. H. (2015). Management of laboratory data and information exchange in the electronic health record. Archives of Pathology and Laboratory Medicine, 139(3), 319-327. DOI: https://doi.org/10.5858/arpa.2013-0712-SO
Windle, P. E. (2010). Secondary data analysis: is it useful and valid?. Journal of PeriAnesthesia Nursing, 25(5), 322-324. DOI: https://doi.org/10.1016/j.jopan.2010.07.005
Wise, J. (2019). Price hike makes access to patient data unaffordable, say researchers. BMJ, 2019; 366: l5305 DOI: https://doi.org/10.1136/bmj.l5305
Xafis, V., Schaefer, G. O., Labude, M. K., Brassington, I., Ballantyne, A., Lim, H. Y., & Laurie, G. T. (2019). An ethics framework for big data in health and research. Asian Bioethics Review, 11(3), 227-254. DOI: https://doi.org/10.1007/s41649-019-00099-x
Xiao, Y., Bochner, A. F., Makunike, B., Holec, M., Xaba, S., Tshimanga, M., & Feldacker, C. (2017). Challenges in data quality: the influence of data quality assessments on data availability and completeness in a voluntary medical male circumcision programme in Zimbabwe. BMJ open, 7(1), e013562. DOI: https://doi.org/10.1136/bmjopen-2016-013562
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