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Area of Science:

  • Health Informatics
  • Big Data Analytics
  • Research Ethics

Background:

  • Growing concerns regarding privacy and data protection in Big Data health research.
  • Ongoing ethical and legal discussions alongside evolving research practices.

Purpose of the Study:

  • To investigate practical approaches to privacy and data protection in Big Data health research.
  • To gain insights into how current research initiatives manage these concerns.

Main Methods:

  • Qualitative multiple-case study design.
  • Selection of two distinct Big Data health research initiatives: YOUth cohort and Big Data Psychiatry.
  • Data collection through document analysis and semi-structured interviews with stakeholders.
  • Iterative thematic analysis of coded data.

Main Results:

  • Emergence of three key themes: 'abandoning anonymisation', 'reconfiguring participant control', and 'the search for guidance and expertise'.
  • Significant effort is required to integrate privacy and data protection norms, particularly when linking or enriching individual participant data.
  • Findings highlight the practical challenges in Big Data health research compliance.

Conclusions:

  • Early engagement with legal complexities is crucial to prevent setbacks and leverage legal flexibility.
  • Designing systems and organizations with privacy rules in mind from the outset is essential.
  • Multidisciplinary collaboration among experts is vital for successfully navigating privacy and data protection in Big Data health research.