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. The National Congress of American Indians publication Walk Softly and Listen Carefully: Building Research Relationships with Tribal Communities emphasizes the need for indigenous data sovereignty principles in research to inform community planning and policy development processes.
Resources to Learn More
the Dots: A Data Sharing Framework for the Local Public Health System
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)
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
Health Equity is
of New Data Sharing Initiative
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
Indigenous Data Governance: Strategies
from United States Native Nations
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
of “Good” Rural Data
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