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8. Acknowledgments

Author

Davenport, L. J. and Hall, John C.

Published
2010

9. Cover

Author

Davenport, L. J. and Hall, John C.

Published
2010

10. Further Reading

Author

Davenport, L. J. and Hall, John C.

Published
2010

11. Foreword

Author

Davenport, L. J. and Hall, John C.

Published
2010

19. 16. Opossums

Author

Davenport, L. J. and Hall, John C.

Published
2010

36. 3. Great Blues

Author

Davenport, L. J. and Hall, John C.

Published
2010

37. Introduction

Author

Davenport, L. J. and Hall, John C.

Published
2010

48. Digital Mega-Studies as a New Research Paradigm: Governing the Health Research of the Future

Author

Bell, J, Prictor, M, Davenport, L, O'Brien, L, Wake, M, Bell, J, Prictor, M, Davenport, L, O'Brien, L, and Wake, M

Abstract

'Digital Mega-Studies' are entirely or extensively digitised, longitudinal, population-scale initiatives, collecting, storing, and making available individual-level research data of different types and from multiple sources, shaped by technological developments and unforeseeable risks over time. The Australian 'Gen V' project exemplifies this new research paradigm. In 2019, we undertook a multidisciplinary, multi-stakeholder process to map Digital Mega-Studies' key characteristics, legal and governance challenges and likely solutions. We conducted large and small group processes within a one-day symposium and directed online synthesis and group prioritisation over subsequent weeks. We present our methods (including elicitation, affinity mapping and prioritisation processes) and findings, proposing six priority governance principles across three areas-data, participation, trust-to support future high-quality, large-scale digital research in health.

Published
2021

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