ABSTRACT
There are clear potential benefits to society from research on health data. To make this possible, those who hold that data have to share it with researchers. An important barrier to sharing is a lack of trust in how shared data will be treated.
We propose that establishing good governance systems for data sharing can help establish trust, but only if those stakeholders whose trust is needed are properly informed about that governance. We analyse and categorise investigate the information which four major Cloud Service Providers and nine Data Sharing Organisations make public. From this we identify whether the technical and organisational tools for good governance are available and how far each data sharing governance system addresses the likely concerns of stakeholders.
Our main finding is that all these organisations are keen to establish trust, but that none disclose enough information to satisfy all their stakeholders. The reason for this may be the differing business models which they operate, which tend to focus their attention on particular groups of stakeholder and thus neglect others.
Keywords: cloud computing, law, technology, trust, privacy, data protection, healthcare, health data, medical research, data sharing organisations, cloud providers, data subjects, data sharing, data governance principles, governance systems, platforms governance, GDPR, data subject rights
Reed, Chris and Silva, Sara, ‘Does Sharing mean Caring?’ – Responsibility and Governance in Health Data Sharing (April 22, 2024), Queen Mary Law Research Paper No 429/2024.
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