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MODEL
Journal of the Formosan Medical Association (2015) xx, 1e2
Available online at www.sciencedirect.com
ScienceDirect journal homepage: www.jfma-online.com
NEWS & PERSPECTIVES
Secondary use of health data Ju-Chuan Yen a, Wen-Ta Chiu b, Shu-Fen Chu b, Min-Huei Hsu a,c,* a Graduate Institute of Biomedical Informatics, College of Medical Science and Technology, Taipei Medical University, Taipei, Taiwan, ROC b School of Public Health, Taipei Medical University, Taipei, Taiwan, ROC c Ministry of Health and Welfare, Taiwan, ROC
Received 28 May 2014; received in revised form 26 February 2015; accepted 16 March 2015
With the advent of big data, the application of data analysis in various fields has increasingly gained attention. Data analysis is by no means innovative in healthcare industry, since the statistics has played an important role in public health and clinical medicine for quite a long time. Studies that claim to be big data do not necessarily conform to the three V’s (volume, velocity, and variety) in the definition of big data. They are within the scope of the secondary use of health data. Secondary use of health data provides personal health information for applications outside of direct health care delivery. It consists of analysis, research, quality and safety measurement, and public health services.1 Recently, a secondary use of health data project that has received the most international attention is the Care.data project of the National Health Service (NHS) in the United Kingdom. The British Prime Minister, David Cameron, announced the project on December 5th, 2013. He declared that this project could maintain the United Kingdom’s leading position in the field of life science. The main aim of this project was to make the patient records database of the NHS available to private research institutes and business organizations in an anonymous manner, in an effort to assist them in conducting research. This proposal immediately
Conflicts of interest: The authors have no conflicts of interest relevant to this article. * Corresponding author. Ministry of Health and Welfare, Taiwan, ROC and School of Public Health, Taipei Medical University, No. 488, Sec. 6, Zhongxiao E. Rd., Taipei 115, Taiwan, ROC. E-mail address: [email protected] (M.-H. Hsu).
raised criticism and complaints from human rights organizations on the grounds of “violating privacy”. Nonetheless, the project was initiated on April 1st, 2014, and collected the clinical data of patients’ visits to primary care physicians of the NHS and stored them in the research database unless the patients chose to opt out. However, most British physicians and citizens did not support the project due to inadequate communication. In the end, the NHS had to announce that the project would be adjourned.2 The launch of electronic medical records makes the mass collection of public health data feasible. However, such data should not be used as research material without authorization from the public. Some people suggest that giving the public access to their own health data should be channeled. In addition to maintaining health, people can donate the health data they have received for research purposes via an appropriate mechanism if they are so inclined. This is a feasible method that conforms to ethical principles.3 A secondary use of health data that is less disputable concerns studies pertaining to health insurance claims data. Such studies have been long conducted in developed countries. In addition to providing a reference to improve health insurance operations, these studies made great contributions by providing an insight into population health. It has been 19 years since the launch of the National Health Insurance (NHI) in Taiwan. Applications for using the NHI database to conduct research have been made available to scholars for 17 years. Currently, more than 1000 papers have been indexed in PubMed, a service of the National Library of Medicine in the United States, and the number of papers has been increasing tremendously. These
http://dx.doi.org/10.1016/j.jfma.2015.03.006 0929-6646/Copyright ª 2015, Elsevier Taiwan LLC & Formosan Medical Association. All rights reserved.
Please cite this article in press as: Yen J-C, et al., Secondary use of health data, Journal of the Formosan Medical Association (2015), http://dx.doi.org/10.1016/j.jfma.2015.03.006
+
MODEL
2 papers demonstrate a number of successful examples of the secondary use of health data worldwide.
References 1. Safran C, Bloomrosen M, Hammond WE, Labkoff S, Markel-Fox S, Tang PC, et al. Toward a national framework for the secondary
J.-C. Yen et al. use of health data: an American Medical Informatics Association White Paper. J Am Med Inform Assoc 2007;14:1e9. 2. Mitchell C, Moraia LB, Kaye J. Health database: Restore public trust in care.data project. Nature 2014;508:458. 3. Huser V, Cimino JJ. Don’t take your EHR to heaven, donate it to science: legal and research policies for EHR post mortem. J Am Med Inform Assoc 2014;21:8e12.
Please cite this article in press as: Yen J-C, et al., Secondary use of health data, Journal of the Formosan Medical Association (2015), http://dx.doi.org/10.1016/j.jfma.2015.03.006
MODEL
Journal of the Formosan Medical Association (2015) xx, 1e2
Available online at www.sciencedirect.com
ScienceDirect journal homepage: www.jfma-online.com
NEWS & PERSPECTIVES
Secondary use of health data Ju-Chuan Yen a, Wen-Ta Chiu b, Shu-Fen Chu b, Min-Huei Hsu a,c,* a Graduate Institute of Biomedical Informatics, College of Medical Science and Technology, Taipei Medical University, Taipei, Taiwan, ROC b School of Public Health, Taipei Medical University, Taipei, Taiwan, ROC c Ministry of Health and Welfare, Taiwan, ROC
Received 28 May 2014; received in revised form 26 February 2015; accepted 16 March 2015
With the advent of big data, the application of data analysis in various fields has increasingly gained attention. Data analysis is by no means innovative in healthcare industry, since the statistics has played an important role in public health and clinical medicine for quite a long time. Studies that claim to be big data do not necessarily conform to the three V’s (volume, velocity, and variety) in the definition of big data. They are within the scope of the secondary use of health data. Secondary use of health data provides personal health information for applications outside of direct health care delivery. It consists of analysis, research, quality and safety measurement, and public health services.1 Recently, a secondary use of health data project that has received the most international attention is the Care.data project of the National Health Service (NHS) in the United Kingdom. The British Prime Minister, David Cameron, announced the project on December 5th, 2013. He declared that this project could maintain the United Kingdom’s leading position in the field of life science. The main aim of this project was to make the patient records database of the NHS available to private research institutes and business organizations in an anonymous manner, in an effort to assist them in conducting research. This proposal immediately
Conflicts of interest: The authors have no conflicts of interest relevant to this article. * Corresponding author. Ministry of Health and Welfare, Taiwan, ROC and School of Public Health, Taipei Medical University, No. 488, Sec. 6, Zhongxiao E. Rd., Taipei 115, Taiwan, ROC. E-mail address: [email protected] (M.-H. Hsu).
raised criticism and complaints from human rights organizations on the grounds of “violating privacy”. Nonetheless, the project was initiated on April 1st, 2014, and collected the clinical data of patients’ visits to primary care physicians of the NHS and stored them in the research database unless the patients chose to opt out. However, most British physicians and citizens did not support the project due to inadequate communication. In the end, the NHS had to announce that the project would be adjourned.2 The launch of electronic medical records makes the mass collection of public health data feasible. However, such data should not be used as research material without authorization from the public. Some people suggest that giving the public access to their own health data should be channeled. In addition to maintaining health, people can donate the health data they have received for research purposes via an appropriate mechanism if they are so inclined. This is a feasible method that conforms to ethical principles.3 A secondary use of health data that is less disputable concerns studies pertaining to health insurance claims data. Such studies have been long conducted in developed countries. In addition to providing a reference to improve health insurance operations, these studies made great contributions by providing an insight into population health. It has been 19 years since the launch of the National Health Insurance (NHI) in Taiwan. Applications for using the NHI database to conduct research have been made available to scholars for 17 years. Currently, more than 1000 papers have been indexed in PubMed, a service of the National Library of Medicine in the United States, and the number of papers has been increasing tremendously. These
http://dx.doi.org/10.1016/j.jfma.2015.03.006 0929-6646/Copyright ª 2015, Elsevier Taiwan LLC & Formosan Medical Association. All rights reserved.
Please cite this article in press as: Yen J-C, et al., Secondary use of health data, Journal of the Formosan Medical Association (2015), http://dx.doi.org/10.1016/j.jfma.2015.03.006
+
MODEL
2 papers demonstrate a number of successful examples of the secondary use of health data worldwide.
References 1. Safran C, Bloomrosen M, Hammond WE, Labkoff S, Markel-Fox S, Tang PC, et al. Toward a national framework for the secondary
J.-C. Yen et al. use of health data: an American Medical Informatics Association White Paper. J Am Med Inform Assoc 2007;14:1e9. 2. Mitchell C, Moraia LB, Kaye J. Health database: Restore public trust in care.data project. Nature 2014;508:458. 3. Huser V, Cimino JJ. Don’t take your EHR to heaven, donate it to science: legal and research policies for EHR post mortem. J Am Med Inform Assoc 2014;21:8e12.
Please cite this article in press as: Yen J-C, et al., Secondary use of health data, Journal of the Formosan Medical Association (2015), http://dx.doi.org/10.1016/j.jfma.2015.03.006
