Research Information System
Thesis Type: Doctorate
Institution Of The Thesis: Orta Doğu Teknik Üniversitesi, Graduate School of Informatics, Medical Informatics, Turkey
Approval Date: 2018
Student: ÖZLEM ÖZKAN
Co-Supervisor: ARSEV UMUR AYDINOĞLU
Supervisor: YEŞİM AYDIN SON
Abstract:The rapid growth in the use of genetic tests in healthcare has opened a new discussion on the redesign of electronic health records to cover genetic/genomic data. Today, this information is treated in the same way as ordinary health data. However, genetic data has many unique properties that raise concerns about privacy and security issues. Moreover, in many countries, there are specific laws and regulations to protect genetic/genomic data. We recommend PHR systems for this purpose since they are under the full control of the owner and thus have a great potential to address privacy concerns. Therefore, we carried out four sub-studies in order to identify critical design issues of genetic data-enabled mPHRs in the scope of this dissertation. First, current mPHRs available in application markets were evaluated to see what was included in existing applications and to identify the missing aspects. Second, with the help of the mPHR analysis results, a survey was developed and administered to174 people, half of whom had genetic test experiences, to assess the public’s concerns and views on genetic data being included in the mPHR. Third, 11 participatory design sessions with five participants were held. At the end of the meetings, a sample paper prototype of genetic data included in the mPHR was developed. Lastly, two focus group studies on the collection of genetic data and confidentiality of Turkish health information systems were organized with 18 experts. As a result of these studies, characteristics and necessities of a genetic data-enabled mPHR were determined.