Datasets carry cultural and political context at all parts of the data life cycle. Historically, Earth science data repositories have taken their guidance and policies as a combination of mandates from their funding agencies and the needs of their user communities, typically universities, agencies, and researchers. Consequently, repository practices have rarely taken into consideration the needs of other communities such as the Indigenous Peoples on whose lands data are often acquired. In recent years, a number of global efforts have worked to improve the conduct of research as well as data policy and practices by the repositories that hold and disseminate it. One of these established the CARE Principles for Indigenous Data Governance (Carroll et al. 2020), representing ‘Collective Benefit’, ‘Authority to Control’, ‘Responsibility’, and ‘Ethics”’ hosted by the Global Indigenous Data Alliance (GIDA 2023a). In order to align to the CARE Principles, repositories may need to update their policies, architecture, service offerings, and their collaboration models. The question is how? Operationalizing principles into active repositories is generally a fraught process. This paper captures perspectives and recommendations from many of the repositories that are members of the Earth Science Information Partners (ESIPFed, n.d.) in conjunction with members of the Collaboratory for Indigenous Data Governance (Collaboratory for Indigenous Data Governance n.d.) and GIDA, defines and prioritizes the set of activities Earth and Environmental repositories can take to better adhere to CARE Principles in the hopes that this will help implementation in repositories globally.
more »
« less
Data Work of Frontline Care Workers: Practices, Problems, and Opportunities in the Context of Data-Driven Long-term Care.
- Award ID(s):
- 1901171
- PAR ID:
- 10527720
- Publisher / Repository:
- Vol. 7, Issue CSCW2 (Computer Supported Cooperative Work & Social Computing)
- Date Published:
- Volume:
- 7
- Issue:
- CSCW2
- Page Range / eLocation ID:
- Article No. 42
- Format(s):
- Medium: X
- Sponsoring Org:
- National Science Foundation
More Like this
-
-
The U.S. healthcare system is in crisis, marked by soaring costs, inefficiencies, and stark disparities in health outcomes. Or at least, this is how U.S. policy makers have predominantly narrated and justified healthcare policy interventions since the 1970s. This dissertation examines how, starting in the 2010s, U.S. policymakers and politicians have turned towards data infrastructures – including new protocols and standards for exchanging clinical, billing, and administrative health data – as the newest site for reforming healthcare markets. Drawing on 24 months of multi-sited ethnographic research in the U.S. healthcare industry, I trace how federal regulations, particularly the 21st Century Cures Act (2016), position data interoperability, or standardized data sharing, as a means to realign a fragmented, profit-driven healthcare market with the efficient production of population health outcomes. I describe this mode of governance, which merges market-solutionism and techno-solutionism, as “computing care.” Through a close examination of “value-based care” policies, social determinants of health data, and the automation of prior authorization, I show how computing care helps to depoliticize the failures of for-profit healthcare markets to produce equitable, accessible, affordable care. The failures of healthcare markets are instead narrated by policymakers as technical problems - of insufficient information and sub-optimal market design. I argue that intensified computation and continually evolving capacities to collect, analyze, and store data help reproduce this depoliticized, market-solutionist mode of governance. Through this project, I interrogate the banal violence of computing care as a mode of governance and point towards the possibility of alternative modes of governance beyond market- and techno-solutionism. I also reflect specifically on the potential role of data infrastructures in advancing alternative modes of care governance. This project contributes to the fields of critical data studies, science and technology studies, and feminist political economy, highlighting the reconfigurations of data and governance necessary to achieve an equitable and just future of healthcare.more » « less
An official website of the United States government

