A Multi-layer model for privacy preserving policy making for disclosure of public health data

Download
2013
Alizadeh Mizani, Mehrdad
Health organizations in Turkey collect ever-increasing amount of individual data are valuable source of information for public health research. However, due to privacy risks, they publish data in aggregated rather than individual forms. The lack of standardized policies regarding secondary uses of health data leads to ineffectiveness of available technical methods. As a result, access to and utilization of person-specific datasets by public health researchers become extremely cumbersome. The bias introduced by privacy protection methods also makes data inefficient for epidemiological and public health contexts. We developed a three layer model for evidence-based policy making for secondary uses of health data. The first layer covers the evaluation of anonymized datasets based on clustering analysis independent of the underlying algorithm. The second layer provides the researcher with Representability Vector (RV), which consists of information about factors affecting the interpretation of research results. RV is also a method to gather researcher requirements and context oriented evidence. The third layer, provides a generic framework for policy making with pseudo-contents covering the issues of anonymization and RV. This framework provides a dynamic approach for disclosure of and reporting bias to the researcher while emphasizing the policy issues along with context, evidence, and regulations.

Suggestions

An Extensible security infrastructure for the secondary use of electronic health records in clinical research
Eryılmaz, Elif; Toroslu, İsmail Hakkı; Doğaç, Asuman; Department of Computer Engineering (2013)
In order to facilitate clinical research studies re-using Electronic Health Records (EHR) has a great potential. Besides interoperability, safeguarding the security and privacy of the medical data in the context of secondary use for clinical research is one of the most important challenges in this respect. In order to ensure that the clinical information is shared among EHR systems and clinical research systems in an ethical and safe way, there needs to be standards-based and adaptable security and privacy ...
Policymaking to preserve privacy in disclosure of public health data: a suggested framework
Mizani, Mehrdad A.; Baykal, Nazife (2015-03-01)
Health organisations in Turkey gather a vast amount of valuable individual data that can be used for public health purposes. The organisations use rigid methods to remove some useful details from the data while publishing the rest of the data in a highly aggregated form, mostly because of privacy concerns and lack of standardised policies. This action leads to information loss and bias affecting public health research. Hence, organisations need dynamic policies and well-defined procedures rather than a spec...
A Semantic interoperability framework for reinforcing post market safety studies
Yüksel, Mustafa; Coşar, Ahmet; Department of Computer Engineering (2013)
Depending mostly on voluntarily sent spontaneous reports, pharmacovigilance studies are hampered by low quantity and quality of patient data. Enabling safety analysts to seamlessly access a wide range of Electronic Health Record (EHR) sources for collecting de-identified medical data sets of selected patient populations and tracing the reported incidents back to original EHRs can provide major improvements for such post market safety studies. The adoption of EHR systems and data exchange among these systems...
A novel report generation approach for medical applications : the sisds methodology and its applications
Kuru, Kaya; Arda, Kemal; Department of Medical Informatics (2010)
In medicine, reliable data are available only in a few areas and necessary information on prognostic implications is generally missing. In spite of the fact that a great amount of money has been invested to ease the process, an effective solution has yet to be found. Unfortunately, existing data collection approaches in medicine seem inadequate to provide accurate and high quality data, which is a prerequisite for building a robust and effective DDSS. In this thesis, many different medical reporting methodo...
Semantic transformation framework to enable statistical research on medical summaries
Paçacı, Anıl; Altıngövde, İsmail Sengör; Doğaç, Asuman; Department of Computer Engineering (2015)
One of the important aspects of the clinical research studies carried out in the pharmacovigilance and pharmacoepidemiology is the postmarketing drug surveillance. Utilization of the available Electronic Health Record (EHR) data is key to complement and strengthen the postmarketing safety studies. In addition, EHRs provide a huge, but still under-utilized source of information for the observational studies in clinical research. However, use of different EHR data models and vocabularies presents an important...
Citation Formats
M. Alizadeh Mizani, “A Multi-layer model for privacy preserving policy making for disclosure of public health data,” Ph.D. - Doctoral Program, Middle East Technical University, 2013.