P Alison Paprica1,2,3,4, Eric Sutherland5, Andrea Smith2, Michael Brudno6,7,8,9, Rosario G Cartagena4, Monique Crichlow10, Brian K Courtney11, Chris Loken10, Kimberlyn M McGrail12,13,14, Alex Ryan15, Michael J Schull3,4, Adrian Thorogood16,17, Carl Virtanen6,7, Kathleen Yang5. 1. University of Toronto, Institute of Health Policy, Management and Evaluation, 155 College Street, Toronto, ON, M5T 3M6, Canada. 2. Vector Institute, Suite 710, 661 University Ave, Toronto, ON, M5G 1M1, Canada. 3. Health Data Research Network Canada, 01-2206 East Mall, Vancouver BC, V6T 1Z3, Canada. 4. ICES, G1 06, 2075 Bayview Avenue, Toronto, ON, M4N 3M5, Canada. 5. Canadian Institute for Health Information, Suite 600, 495 Richmond Road, Ottawa, ON, K2A 4H6, Canada. 6. HPC4Health, 686 Bay St. Toronto, ON, M5G 0A4, Canada. 7. University Health Network, 190 Elizabeth St., Toronto, ON, M5G 2C4, Canada. 8. Hospital for Sick Children, 555 University Ave, Toronto, ON, M5G 1X8, Canada. 9. University of Toronto, Department of Computer Science, 214 College St, Toronto, ON, M5T 3A1, Canada. 10. Compute Ontario, Suite 1140, 661 University Avenue, Toronto, ON, M5G 1M1, Canada. 11. Sunnybrook Research Institute, 2075 Bayview Avenue, Toronto, ON, M4N 3M5, Canada. 12. Population Data BC, University of British Columbia, 201-2206 East Mall, Vancouver, BC, V6T 1Z3, Canada. 13. UBC Centre for Health Services and Policy Research, 2206 E Mall, Vancouver, BC, V6T 1Z3, Canada. 14. University of British Columbia, Faculty of Medicine, School of Population and Public Health, 2206 E Mall, Vancouver, BC, V6T 1Z3, Canada. 15. MaRS Discovery District MaRS Centre, South Tower 101 College Street, Suite 100 Toronto, ON, M5G 1L7, Canada. 16. McGill University, Centre of Genomics and Policy, Suite 5200, 740, avenue Dr. Penfield, Montreal, QC, H3A 0G1, Canada. 17. Global Alliance for Genomics and Health, MaRS Centre, West Tower, Suite 510, 661 University Avenue, Toronto, ON, M5G 0A3, Canada.
Abstract
INTRODUCTION: Increasingly, the label "data trust" is being applied to repeatable mechanisms or approaches to sharing data in a timely, fair, safe, and equitable way. However, there is an absence of practical guidance regarding how to establish and operate a data trust. AIM AND APPROACH: In December 2019, the Canadian Institute for Health Information and the Vector Institute for Artificial Intelligence convened a working meeting of 19 people representing 15 Canadian organizations/initiatives involved in data sharing, most of which focus on public sector health data. The objective was to identify essential requirements for the establishment and operation of data trusts in the Canadian context. Preliminary requirements were discussed during the meeting and then refined as authors contributed to this manuscript. RESULTS: Twelve minimum specification requirements ("min specs") for data trusts were identified. The foundational min spec is that data trusts must meet all legal requirements, including legal authority to collect, hold or share data. In addition, there was agreement that data trusts must have (i) an accountable governing body to ensure that the data trust achieves its stated purpose and is transparent, (ii) comprehensive data management including clear processes and qualified individuals responsible for the collection, storage, access, disclosure and use of data, (iii) training and accountability requirements for all data users and (iv) ongoing public and stakeholder engagement. CONCLUSIONS: Practical guidance for the establishment and operation of data trusts was articulated in the form of 12 min specs requirements. The 12 min specs are a starting point. Future work to refine and strengthen them with members of the public, companies, and additional research data stakeholders from within and outside of Canada, is recommended.
INTRODUCTION: Increasingly, the label "data trust" is being applied to repeatable mechanisms or approaches to sharing data in a timely, fair, safe, and equitable way. However, there is an absence of practical guidance regarding how to establish and operate a data trust. AIM AND APPROACH: In December 2019, the Canadian Institute for Health Information and the Vector Institute for Artificial Intelligence convened a working meeting of 19 people representing 15 Canadian organizations/initiatives involved in data sharing, most of which focus on public sector health data. The objective was to identify essential requirements for the establishment and operation of data trusts in the Canadian context. Preliminary requirements were discussed during the meeting and then refined as authors contributed to this manuscript. RESULTS: Twelve minimum specification requirements ("min specs") for data trusts were identified. The foundational min spec is that data trusts must meet all legal requirements, including legal authority to collect, hold or share data. In addition, there was agreement that data trusts must have (i) an accountable governing body to ensure that the data trust achieves its stated purpose and is transparent, (ii) comprehensive data management including clear processes and qualified individuals responsible for the collection, storage, access, disclosure and use of data, (iii) training and accountability requirements for all data users and (iv) ongoing public and stakeholder engagement. CONCLUSIONS: Practical guidance for the establishment and operation of data trusts was articulated in the form of 12 min specs requirements. The 12 min specs are a starting point. Future work to refine and strengthen them with members of the public, companies, and additional research data stakeholders from within and outside of Canada, is recommended.
Entities:
Keywords:
data governance; data infrastructure; data protection; data trust; public engagement
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