Assessing the readiness of Turkish health information systems for integrating genetic/genomic patient data: System architecture and available terminologies, legislative, and protection of personal data

• Published in: Health policy (Amsterdam) 2021-02, Vol.125 (2), p.203-212
• Main Authors: Şık, Ayhan Serkan, Aydınoğlu, Arsev Umur, Aydın Son, Yeşim
• Format: Article
• Language: English
• Subjects: Clinical decision making; Clinical training; Data; Genetic test data representation in Turkey’s EHR; Genetic testing; Genetics; Genomic data management; Genomics; Health; Health administration; Health information; Health records; Information systems; Infrastructure; Legislation; Medical diagnosis; Medical personnel; Medical records; Patient communication; Personal information; Precision medicine; Privacy; Regulation; Representation; Rules and Regulations about Genetic Testing in Turkey; Turkish EHR; Workforce
• ISSN: 0168-8510; 1872-6054
• DOI: 10.1016/j.healthpol.2020.12.004

•Turkish National Electronic Health Record interoperability measures assessed for genetic information exchange.•Review of legislations in charge, reservations and expectations of experts are defined.•Integration of an ontology-based terminology translated to Turkish is required.•Medical data exchange standards that enables genomic data management are essential.•Turkey is varied from global attitude about genetic/genomic test representation in EHR. Advances in genetic/genomic research and translational studies drive the progress on molecular diagnosis, personalised treatment, and monitoring. Healthcare professionals and governments are encouraged to set administrative regulations and implement structured and interoperable representation to utilise the genetic/genomic data, which will support precision medicine approaches through Health Information Systems (HIS). Clear regulations and careful legislation are also crucial for the security and privacy of genetic/genomic test data. In this article, we present a review of the National Health Information System of Turkey (NHIS-T) about interoperable health data representation for genetic tests. We discuss the content of rules and regulations related to genetic/genomic testing and structured data representation in Turkey. A brief comparison of the Turkish “Law on the Protection of Personal Data” (LPPD) in genetic/genomic data privacy with its counterparts is presented. The final discussion about the shortcomings of Turkey is transferable to health information systems worldwide. Constructing a national reference database and IT infrastructure to enable data integration and exchange between genomic data, metadata, and health records will improve genetics studies’ utility and outcomes. The critical success factors behind integration are establishing broadly accepted terminologies and government guidance. The governments should set clear a transparent policy defining the legal and ethical framework, workforce training, clinical decision-support tools, public engagement, and education concurrently.