Prerequisites for International Exchanges of Health Information: Comparison of Australian, Austrian, Finnish, Swiss, and US Privacy Policies

Abstract

Capabilities to exchange health information are critical to accelerate discovery and its diffusion to healthcare practice. However, the same ethical and legal policies that protect privacy hinder these data exchanges, and the issues accumulate if moving data across geographical or organizational borders. This can be seen as one of the reasons why many health technologies and research findings are limited to very narrow domains. In this paper, we compare how using and disclosing personal data for research purposes is addressed in Australian, Austrian, Finnish, Swiss, and US policies with a focus on text data analytics. Our goal is to identify approaches and issues that enable or hinder international health information exchanges. As expected, the policies within each country are not as diverse as across countries. Most policies apply the principles of accountability and/or adequacy and are thereby fundamentally similar. Their following requirements create complications with re-using and re-disclosing data and even secondary data: 1) informing data subjects about the purposes of data collection and use, before the dataset is collected; 2) assurance that the subjects are no longer identifiable; and 3) destruction of data when the research activities are finished. Using storage and compute cloud services as well as other exchange technologies on the Internet without proper permissions is technically not allowed if the data are stored in another country. Both legislation and technologies are available as vehicles for overcoming these barriers. The resulting richness in information variety will contribute to the development and evaluation of new clinical hypotheses and technologies.