Beyond Legal Frameworks and Security Controls For Accessing Confidential Survey Data: Engaging Data Users in Data Protection

Abstract

With a growing demand for data reuse and open data within the scientific ecosystem, protecting the confidentiality and privacy of survey data is increasingly important.  It requires more than legal procedures and technological controls; it requires social and behavioral intervention. In this research note, we delineate the disclosure risks of various types of survey data (i.e., longitudinal data, social network data, sensitive information and biomarkers, and geographic data), the current motivation for data reuse and challenges to data protection. Despite rigorous efforts to protect data, there are still threats to mitigate the protection of confidentiality in microdata. Unintentional data breaches, protocol violations, and the misuse of data are observed even in well-established restricted data access systems, which indicates that the systems all may rely heavily on trust. Creating and maintaining that trust is critical to secure data access. We suggest four ways of building trust; User-Centered Design Practices; Promoting Trust for Protecting Confidential Data; General Training in Research Ethics; Specific Training in Data Security Protocols, with an example of a new project ‘Researcher Passport’ by the Inter-university Consortium for Political and Social Research. Continuous user-focused improvements in restricted data access systems are necessary so that we promote a culture of trust among the research and data user community, train both in the general topic of responsible research and in the specific requirements of these systems, and offer systematic and holistic solutions.