Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations
Author: P. Alison Paprica, Monique Crichlow, Donna Curtis Maillet, Sarah Kesselring, Conrad Pow, Thomas P. Scarnecchia, Michael J. Schull, Rosario G. Cartagena, Annabelle Cumyn, Salman Dostmohammad, Keith O. Elliston, Michelle Greiver, Amy Hawn Nelson, Sean L. Hill, Wanrudee Isaranuwatchai, Evgueni Loukipoudis, James Ted McDonald, John R. McLaughlin, Alan Rabinowitz, Fahad Razak, Stefaan G. Verhulst, Amol A. Verma, J. Charles Victor, Andrew Young, Joanna Yu, Kimberlyn McGrail
Year: 2023
Category:
Research Methods
Read the journal article in the International Journal of Population Data Science
Introduction
Around the world, many organisations are working on ways to increase the use, sharing, and reuseof person-level data for research, evaluation, planning, and innovation while ensuring that data aresecure and privacy is protected. As a contribution to broader efforts to improve data governanceand management, in 2020 members of our team published 12 minimum specification essentialrequirements (min specs) to provide practical guidance for organisations establishing or operatingdata trusts and other forms of data infrastructure.
Approach and Aims
We convened an international team, consisting mostly of participants from Canada and the UnitedStates of America, to test and refine the original 12 min specs. Twenty-three (23) data-focused organisations and initiatives recorded the various ways they address the min specs. Sub-teamsanalysed the results, used the findings to make improvements to the min specs, and identifiedmaterials to support organisations/initiatives in addressing the min specs.
Results
Analyses and discussion led to an updated set of 15 min specs covering five categories: one min specfor Legal, five for Governance, four for Management, two for Data Users, and three for Stakeholder &Public Engagement. Multiple changes were made to make the min specs language more technicallycomplete and precise. The updated set of 15 min specs has been integrated into a Canadian nationalstandard that, to our knowledge, is the first to include requirements for public engagement andIndigenous Data Sovereignty.
Conclusions
The testing and refinement of the min specs led to significant additions and improvements. Themin specs helped the 23 organisations/initiatives involved in this project communicate and comparehow they achieve responsible and trustworthy data governance and management. By extension, themin specs, and the Canadian national standard based on them, are likely to be useful for otherdata-focused organisations and initiatives.
