Essential requirements for the governance and management of data trusts, data repositories, and other data collaborations.

Introduction: Around 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 Aims: We 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. Results: Analyses 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. Conclusions: The 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.

Four questions to guide decision-making for data sharing and integration.

Introduction: This paper presents a Four Question Framework to guide data integration partners in building a strong governance and legal foundation to support ethical data use. Objectives: While this framework was developed based on work in the United States that routinely integrates public data, it is meant to be a simple, digestible tool that can be adapted to any context. Methods: The framework was developed through a series of public deliberation workgroups and 15 years of field experience working with a diversity of data integration efforts across the United States. Results: The Four Questions-Is this legal? Is this ethical? Is this a good idea? How do we know (and who decides)?-should be considered within an established data governance framework and alongside core partners to determine whether and how to move forward when building an Integrated Data System (IDS) and also at each stage of a specific data project. We discuss these questions in depth, with a particular focus on the role of governance in establishing legal and ethical data use. In addition, we provide example data governance structures from two IDS sites and hypothetical scenarios that illustrate key considerations for the Four Question Framework. Conclusions: A robust governance process is essential for determining whether data sharing and integration is legal, ethical, and a good idea within the local context. This process is iterative and as relational as it is technical, which means authentic collaboration across partners should be prioritized at each stage of a data use project. The Four Questions serve as a guide for determining whether to undertake data sharing and integration and should be regularly revisited throughout the life of a project. Highlights: Strong data governance has five qualities: it is purpose-, value-, and principle-driven; strategically located; collaborative; iterative; and transparent.Through a series of public deliberation workgroups and 15 years of field experience, we developed a Four Question Framework to determine whether and how to move forward with building an IDS and at each stage of a data sharing and integration project.The Four Questions-Is this legal? Is this ethical? Is this a good idea? How do we know (and who decides)?-should be carefully considered within established data governance processes and among core partners.

Leveraging integrated data for program evaluation: Recommendations from the field.

Use of administrative data to inform decision making is now commonplace throughout the public sector, including program and policy evaluation. While reuse of these data can reduce costs, improve methodologies, and shorten timelines, challenges remain. This article informs evaluators about the growing field of Integrated Data Systems (IDS), and how to leverage cross-sector administrative data in evaluation work. This article is informed by three sources: a survey of current data integration efforts in the United States (U.S.) (N=63), informational interviews with experts, and internal knowledge cultivated through Actionable Intelligence for Social Policy's (AISP) 12+ years of work in the field. A brief discussion of the U.S. data integration context and history is provided, followed by discussion of tangible recommendations for evaluators, examples of evaluations relying on integrated data, and a list of U.S. IDS sites with publicly available processes for external data requests. Despite the challenges associated with reusing administrative data for program evaluation, IDS offer evaluators a new set of tools for leveraging data across institutional silos.

Developmental impacts of the COVID-19 pandemic on young children: a conceptual model for research with integrated administrative data systems.

The COVID-19 pandemic made its mark on the entire world, upending economies, shifting work and education, and exposing deeply rooted inequities. A particularly vulnerable, yet less studied population includes our youngest children, ages zero to five, whose proximal and distal contexts have been exponentially affected with unknown impacts on health, education, and social-emotional well-being. Integrated administrative data systems could be important tools for understanding these impacts. This article has three aims to guide research on the impacts of COVID-19 for this critical population using integrated data systems (IDS). First, it presents a conceptual data model informed by developmental-ecological theory and epidemiological frameworks to study young children. This data model presents five developmental resilience pathways (i.e. early learning, safe and nurturing families, health, housing, and financial/employment) that include direct and indirect influencers related to COVID-19 impacts and the contexts and community supports that can affect outcomes. Second, the article outlines administrative datasets with relevant indicators that are commonly collected, could be integrated at the individual level, and include relevant linkages between children and families to facilitate research using the conceptual data model. Third, this paper provides specific considerations for research using the conceptual data model that acknowledge the highly-localised political response to COVID-19 in the US. It concludes with a call to action for the population data science community to use and expand IDS capacities to better understand the intermediate and long-term impacts of this pandemic on young children.