Akademik Veri Yönetim Sistemi
Tezin Türü: Doktora
Tezin Yürütüldüğü Kurum: Orta Doğu Teknik Üniversitesi, Enformatik Enstitüsü, Sağlık Bilişimi Anabilim Dalı, Türkiye
Tezin Onay Tarihi: 2023
Tezin Dili: İngilizce
Öğrenci: AYHAN SERKAN ŞIK
Asıl Danışman (Eş Danışmanlı Tezler İçin): Yeşim Aydin Son
Eş Danışman: Arsev Umur Aydinoğlu
Özet:
From birth to death, an individual’s medical status is documented under various headings, including welfare, diseases, medications, laboratory tests, and vaccinations. In conjunction with the advance of information technologies, for more than 60 years, documentation has been handled through Electronic Health Records (EHR) [1]. Successful progress in decision support systems for public health by combining records from individuals [2]. Constructive public health and precision medicine achievements can be accomplished by adopting EHR standards based on structured data. Besides, standards provide interoperable and accessible recordings among the actors of medical information.
Following the advances in molecular genetics and genomic technologies, a tremendous amount of molecular data is being produced. Genetic tests and biomarkers for different diseases are increasing daily [3]. Considering precision medicine, interoperable genetic test result reporting is indispensable. The ticket for interoperability is embracing standardised medical records among shareholders (personal/machinery).
The National Health Information System of Türkiye is known as SağlıkNET. SağlıkNET is EHR of Türkiye. International standards translated into Turkish language and officially in use cannot manage genetic data in a standardised manner. Codes in effect, are mainly focused on diseases. For reimbursement, a few genetic tests are coded locally in an idiosyncratic way. Recently, in April 2022, gene names associated with diseases were provided in the Health Code Reference Server (HCRS) of Türkiye. A total of 20.493 genes are provided but not explicitly stated in the National Health Data Dictionary (NHDD) of Türkiye. In conclusion, with full intent to achieve an interoperable health record, implications in Türkiye for genetically oriented diseases and genetic tests do not obey any standards or structured data format. In this dissertation, we aim to provide a conceptual framework for a meaningful and information exchange-capable electronic health information system, benefitting international standards for genetic test result reporting.