Examining Data Access Gaps for Tribal Epidemiology Centers: Qualitative Interviews and a 50-State Syphilis Data Audit.

CONTEXT: Federal law establishes American Indian and Alaska Native Tribes and Tribal Epidemiology Centers (TECs) as public health authorities with rights to state data to conduct public health activities. Tribal authorities, however, struggle to access public health data.

OBJECTIVES

To examine TECs' access and barriers to public health surveillance data, and using syphilis as a case study, to assess data availability and timeliness nationwide.

DESIGN

In-depth qualitative interviews and a desk audit of syphilis data by states.

SETTING

All 12 TECs who collectively provide epidemiologic and public health support to 574 Tribes and 41 Urban Indian Centers nationwide.

PARTICIPANTS

Sixteen interviewees from 7 TECs participated; their positions ranged from staff epidemiologists to center directors.

MAIN OUTCOME MEASURES: Interviews explored access to sexually transmitted infections data, barriers, and improvement recommendations. Desk audit applied Google searches to locate state-published syphilis data. We extracted information on reporting detail, including time from reporting period end to publication, demographic and geographic variables, and syphilis-specific indicators (eg, type and risk factors).

RESULTS

Participants reported considerable difficulties accessing timely, useful health data from states, instead relying on publicly facing data. The primary barrier was state health departments' lack of recognition of TECs' and Tribes' public health authority. Data gatekeeping affected public health functions from data access to Tribal health outcomes. Desk audit revealed 12 of 50 states reporting syphilis data within the past year; only 4 are among the top 10 states by American Indian and Alaska Native population share.

CONCLUSIONS

Publicly facing data are generally not timely or detailed enough for public health monitoring response, underscoring need for TEC access to timely, state-held epidemiological data. TEC and Tribal public health authority must be reinforced through formal recognition by states, and enforced by federal agencies who can hold states accountable through funding agreements.