Title: ESSENTIAL DESIGN COMPONENTS OF GENETIC DATA ENABLED MOBILE PERSONAL HEALTH RECORD SYSTEMS

PhD Candidate: Özlem Özkan

Program: Health Informatics Department 

Date: 09 July Monday 09:30

Place: Conference Hall-01

Abstract:The rapid growth in the use of genetic tests in healthcare has opened a new discussion on redesign of electronic health records to cover the genetic/genomic data. Today, this work is done in the same way with ordinary health data. However, genetic data has many unique properties that raise concerns on privacy and security issues and there are even special laws and acts to protect genetic/genomic in many countries. We strongly suggest Personal Health Records (PHR) systems for this purpose since it is under full control of the owner, and so has a great potential to cover privacy concerns. Thus, we applied four sub-studies in order to identify critical design issues of genetic data enabled mobile PHR in the scope of this dissertation. First, we analyzed the mobile application markets and evaluated the mPHRs in order to see what is in existing applications, and to identify the missing aspects. Second, with the help of the analysis results, a survey was developed and conducted to 174 people, half of which had genetic test experiences to reach publics concerns and views on the issue. Third, as a parallel study, 11 participatory design sessions with five participants were held and a paper prototype of genetic data included mPHR was developed as a result. Lastly, two focus group studies on collection of genetic data and confidentiality in Turkish health information systems were organized with 18 experts. By this way, all aspects of a genetic data enabled mPHR design were determined and presented to the literature.