Results from Two Assessments of Data Sharing Status By State and Tribal Epidemiology Center

BACKGROUND: The CSTE Tribal Epidemiology Subcommittee developed an assessment of data sharing status by state to gain a base-line understanding of data sharing from the perspective of Tribal Epidemiology Centers (TECs) as a preliminary step to facilitate data sharing between states and TECs.  A subsequent assessment was sent to states with federally recognized tribes to obtain the state perspective of data sharing with TECs.

METHODS:  A workgroup of CSTE Tribal Epidemiology Subcommittee members developed the first assessment and distributed the assessment to the 12 TEC Directors requesting their perspective on data sharing with the state health agencies.  The assessment included questions on types of data requested and/or obtained and the factors that affect data sharing between partners.  TEC Directors were asked to complete one assessment for each state in their jurisdiction so that the data sharing status of each state-TEC relationship was captured.  Workgroup members revised the assessment tool to send to Tribal Epidemiology Points of Contact (POCs) in state health departments.  POCs will be asked similar questions to those asked of TEC Directors.

RESULTS:  All 12 TEC Directors responded to the assessment between Dec 2012 and August 2013.  Up to half of TECs had ever requested and/or obtained record level data with or without identifiers on births, deaths, notifiable conditions, hospital discharges, emergency department visits, or other data types (range: 1-6 TECs) .  No TECs requested and/or obtained immunization data. Reasons for not requesting and/or obtaining data include a lack of established process to request or obtain data, previous difficulty with requests, sub-optimal data quality (e.g., racial misclassification), data not collected, and cost.  Some TECs has few issues working with their state counterpart and enjoy positive working relationships. Results for the upcoming assessment from the POC perspective will be presented and compared to the TEC perspective.

CONCLUSIONS:  While some state health agencies and TECs have good working relationships, there are others that would benefit from having tools and resources to facilitate the data sharing process. CSTE is working with members to develop tools to facilitate data sharing and encourage working relationships between state health agencies and TECs.