Introduction by Julia Lane and Andrew Reamer of a Special Issue of the Annals of the American Academy of Political and Social Science: “Throughout the United States, there is broad interest in expanding the nation’s capacity to design and implement public policy based on solid evidence. That interest has been stimulated by the new types of data that are available that can transform the way in which policy is designed and implemented. Yet progress in making use of sensitive data has been hindered by the legal, technical, and operational obstacles to access for research and evaluation. Progress has also been hindered by an almost exclusive focus on the interest and needs of the data users, rather than the interest and needs of the data providers. In addition, data stewardship is largely artisanal in nature.
There are very real consequences that result from lack of action. State and local governments are often hampered in their capacity to effectively mount and learn from innovative efforts. Although jurisdictions often have treasure troves of data from existing programs, the data are stove-piped, underused, and poorly maintained. The experience reported by one large city public health commissioner is too common: “We commissioners meet periodically to discuss specific childhood deaths in the city. In most cases, we each have a thick file on the child or family. But the only time we compare notes is after the child is dead.”1 In reality, most localities lack the technical, analytical, staffing, and legal capacity to make effective use of existing and emerging resources.
It is our sense that fundamental changes are necessary and a new approach must be taken to building data infrastructures. In particular,
- Privacy and confidentiality issues must be addressed at the beginning—not added as an afterthought.
- Data providers must be involved as key stakeholders throughout the design process.
- Workforce capacity must be developed at all levels.
- The scholarly community must be engaged to identify the value to research and policy….
To develop a roadmap for the creation of such an infrastructure, the Bill and Melinda Gates Foundation, together with the Laura and John Arnold Foundation, hosted a day-long workshop of more than sixty experts to discuss the findings of twelve commissioned papers and their implications for action. This volume of The ANNALS showcases those twelve articles. The workshop papers were grouped into three thematic areas: privacy and confidentiality, the views of data producers, and comprehensive strategies that have been used to build data infrastructures in other contexts. The authors and the attendees included computer scientists, social scientists, practitioners, and data producers.
This introductory article places the research in both an historical and a current context. It also provides a framework for understanding the contribution of the twelve articles….(More)”.