title: Towards an international electronic repository and virtual laboratory of open data and open-source software for telehealth research: comparison of international, Australian and Finnish privacy policies.
abstract: Health data includes all content related to health in all data formats, document types, information systems, publication media and languages from all specialties, organisations, regions, states and countries. Capabilities to share, integrate and compare these data contents, clinical trial results and other evaluation outcomes together with telehealth applications for data processing are critical to accelerate discovery and its diffusion to clinical practice. However, the same ethical and legal frameworks that protect privacy hinder this open data and open-source code approach and the issues accumulate if moving data across national, regional or organisational borders. This can be seen as one of the reasons why many telehealth applications and health-research findings tend to be limited to very narrow domains and global results are lacking. The aim of this paper is to take steps towards establishing an international electronic repository and virtual laboratory of open data and open-source code for research purposes by comparing international, Australian and Finnish frameworks. The frameworks seem to be fundamentally similar; they apply the principles of accountability and adequacy to using and disclosing personal data. Their requirements to inform data subjects about the purposes of data collection and use before the dataset is collected, assure that individuals are no longer identifiable and to destruct data when the research activities are finished make sharing data and even secondary data difficult. Using the Internet or cloud services for sharing without proper approvals by ethics committees is technically not allowed if the data are stored in another country. The research community needs to overcome these barriers and develop a virtual laboratory, which operates on distributed data repositories. This empowers the community by enabling systematic evaluations of new technologies and research hypotheses on a rich variety of data and against existing applications, and subsequent tracking of quality improvements in time.
authors.affiliation: NICTA, National ICT, Australia. Hanna.Suominen@nicta.com.au
authors.forename: Hanna
authors.initials: H
authors.lastname: Suominen
mesh_terms: D001315:Australia; D003219:Confidentiality; D003625:Data Collection / Q000379:methods; D057225:Data Mining; D005387:Finland; D006801:Humans; D033181:Information Dissemination / Q000379:methods*; D007256:Information Systems / Q000458:organization & administration*; D007391:International Cooperation; D017216:Telemedicine / Q000458:organization & administration*