Suchergebnisse

ObjectiveTo test and refine a list of 12 minimum specification essential requirements (min specs) for data trusts, data repositories, and other data collaborations that had been generated and published by a team of 19 Canadians in 2020.
ApproachWe convened an international team of more than 50 people to discuss, test, and refine the 12 min specs. Twenty-three (23) organizations tested the min specs and five analysis sub-teams were formed to identify commonalities and differences in terms of how the min specs are being fulfilled, and ways to improve the min specs. In parallel, we worked with Canada's CIO Strategy Council to develop the voluntary standard "CAN/CIOSC 100-7 Operating Model for Responsible Data Stewardship" based on the updated min specs.
ResultsThe list of min specs increased from 12 to 15: one for Legal, five for Governance, four for Management, two for Data Users, and three for Stakeholder & Public Engagement. The main changes were the division of requirements that had initially been grouped together under Stakeholder & Public Engagement, one new Governance min spec focused on Indigenous data sovereignty, one new Management min spec focused on data documentation, and multiple changes to make the min specs more precise and directive. The CAN/CIOSC 100-7 standard is progressing through committees and approvals and on track to be finalized by summer 2022. To our knowledge, it will be the first standard that identifies public engagement as a requirement for data trusts, data repositories, or other data collaboratives.
ConclusionsIncluding international team members in the testing and refinement of the min specs led to significant improvements. The process we used may also benefit other teams and organizations who are working to progress from frameworks and principles to practical guidance.

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 a gap in terms of practical guidance about 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. Preliminary findings were presented during the meeting then refined as participants and co-authors identified relevant literature and contributed to this manuscript.

Results: Twelve (12) 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 which ensures the data trust advances its stated purpose and is transparent, (ii) comprehensive data management including responsible parties and clear processes 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.
Conclusion / Implications: Based on a review of the literature and advice from participants from 15 Canadian organizations/initiatives, practical guidance in the form of twelve min specs for data trusts were agreed on. Public engagement and continued exchange of insights and experience is recommended on this evolving topic.

IntroductionAround the world, many organisations are working on ways to increase the use, sharing, and reuse of person-level data for research, evaluation, planning, and innovation while ensuring that data are secure and privacy is protected. As a contribution to broader efforts to improve data governance and management, in 2020 members of our team published 12 minimum specification essential requirements (min specs) to provide practical guidance for organisations establishing or operating data trusts and other forms of data infrastructure.
Approach and AimsWe convened an international team, consisting mostly of participants from Canada and the United States 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-teams analysed the results, used the findings to make improvements to the min specs, and identified materials to support organisations/initiatives in addressing the min specs.
ResultsAnalyses and discussion led to an updated set of 15 min specs covering five categories: one min spec for 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 technically complete and precise. The updated set of 15 min specs has been integrated into a Canadian national standard that, to our knowledge, is the first to include requirements for public engagement and Indigenous Data Sovereignty.
ConclusionsThe testing and refinement of the min specs led to significant additions and improvements. The min specs helped the 23 organisations/initiatives involved in this project communicate and compare how they achieve responsible and trustworthy data governance and management. By extension, the min specs, and the Canadian national standard based on them, are likely to be useful for other data-focused organisations and initiatives.