Data Sharing and Equitable Ownership of Data

Access to valid and reliable data is essential for rural communities planning and implementing health equity programs. Rural communities need access to data to identify health inequities and to plan and prioritize program activities. However, many communities experience challenges accessing data, which creates barriers to informed decision-making at all levels. In addition, smaller populations and lower population densities can complicate data collection and reporting in rural communities.

Many rural communities are making improved data collection and sharing a priority. The Center of Rural and Primary Healthcare at the University of South Carolina launched the SC Rural Healthcare Resource Dashboard to provide communities in their state with access to reliable cross-sector data so that they may plan and implement programs with confidence.

Data ownership is also a critical issue for many communities, especially those who have experienced historic coercion or harm from participating in research. Many tribal communities emphasize the importance of indigenous data sovereignty, which asserts the rights of tribal nations to oversee how their data is collected, owned, and used. The framework calls for the reclamation of tribal data to best serve the interests and aspirations of indigenous and tribal nations and promote Native nation rebuilding.

Resources to Learn More

Connecting the Dots: A Data Sharing Framework for the Local Public Health System
Document
Describes requirements for and opportunities to share data between local health departments and other community partners.
Organization(s): National Association of County and City Health Officials (NACCHO)
Date: 5/2014

Good Data
Document
Discusses actionable solutions to the “bad” data crisis and the need for open and shared data.
Author(s): Daly, A., Devitt, S. K., Mann, M., et al.
Organization(s): Institute of Network Cultures
Date: 1/2019

Health Equity is Focus of New Data Sharing Initiative
Document
Highlights the Data Across Sectors for Health (DASH) initiative and presents strategies from grantees currently receiving funding to improve data sharing capabilities.
Organization(s): Center for Health Care Strategies
Date: 6/2021

Indigenous Data Governance: Strategies from United States Native Nations
Document
Describes indigenous data sovereignty and its relationship to indigenous data governance (IDG). Discusses the role of IDG in equitable data collection and analysis by and for tribal nations. Offers case studies and recommendations supporting Native nations' control of their data.
Author(s): Carrol, S. R., Rodriguez-Lonebear, D., & Martinez, A.
Citation: Data Science Journal, 18(1), 31
Date: 7/2019

In Search of “Good” Rural Data
Document
Provides information about the importance of rural data, the current state of rural data, and strategies to strengthen rural data sources and recommendations for rural data users.
Author(s): Scally, P. C., Burnstein, E., & Gerken, M.
Organization(s): The Urban Institute
Date: 4/2020