BACKGROUND:
Rapid growth in wearable technologies, mHealth platforms, and electronic medical record systems has transformed the generation, sharing and use of health data[1]. Patients are generating large volumes of data outside traditional clinical settings yet retain limited control over their data. Legal and ethical frameworks typically position organisations as custodians rather than owners of health data, while patients are granted partial rights of access as their data moves across fragmented digital ecosystems[2]. The increasing use of AI on integrated health data streams further raises questions about privacy, accountability, transparency, and potential harm when health data are reused beyond their original purpose[3]. Combined with overreliance on consent as a governance mechanism, ambiguities are increasingly limiting research access and the public value of digital health investments.

METHODS:
Led by experts/researchers from Australia, Norway and Germany, this facilitated, discussion-based workshop will debate real-world exemplars that reflect common health data governance dilemmas. Through comparative analysis of data flows, consent practices, and custodial responsibilities, participants will identify control points, areas of misalignment between patient expectations and practice, and systemic governance vulnerabilities. Participants will also examine how AI and data-driven approaches can be applied to data streams and how the widespread uncertainty about accountability for secondary use and harm, particularly when data is repurposed for AI, can be addressed. Outputs will be captured through collaborative mapping exercises.

RESULTS:
The workshop will surface themes across different data domains, including disconnect between data generation and control. A structured synthesis of governance gaps and a shared set of cross-jurisdictional principles will be produced, emphasizing transparency, proportionality, accountability, and public benefit.

CONCLUSIONS:
Addressing the question of “who owns health data” helps determine who can access, share, or profit from health data, and under what conditions, which is critical for building shared understanding and advancing more ethical, trustworthy health data governance.