Harmonization of Health Data Governance, Oversight, and Policy: Reimagining Stewardship

The Pan-Canadian Health Data Charter advocates for new legal institutions, that would empower organizations to steward health data for future use. We propose three potential legal mechanisms to realize this vision: (i) data stewards as fiduciaries, (ii) licensed data stewards, and (iii) licensed data trusts. These mechanisms would enable representative decision-makers acting on behalf of affected communities and publics to make binding choices about whether proposed health information uses respect applicable norms. This would help to foster public trust in health sector use of information. It would also enable data stewards to base their decisions on data re-use upon actionable feedback from affected populations regarding their preferences in balancing competing norms, which these institutions would produce. Our proposals hope to move the literature beyond narrow debates about the benefits of increasing or reducing regulation, towards an actionable vision of adaptive data governance in practice.