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Non-nominal HIV surveillance: preserving privacy while tracking an epidemic
D M Patrick1, M L Rekart, D Cook
1British Columbia Centre for Disease Control Society, Vancouver. david.patrick@bccdc.hnet.bc.ca
Summary
Enhanced HIV surveillance using non-nominal testing improved data accuracy by reducing duplicates and increasing essential demographic information. This method balances public health needs with patient privacy rights effectively.
Area of Science:
- Public Health
- Epidemiology
- Infectious Disease Surveillance
Background:
- Non-nominal HIV testing systems present challenges in accurate individual identification and data completeness.
- Ensuring robust HIV surveillance is critical for effective public health interventions and resource allocation.
Purpose of the Study:
- To improve the accuracy and completeness of HIV surveillance data within a non-nominal provincial testing system.
- To implement and evaluate enhancements for identifying unique positive HIV tests and gathering essential epidemiological information.
Main Methods:
- Analysis of confirmatory HIV tests from a provincial laboratory (1995-1996).
- Automated matching of non-nominal identifiers to eliminate duplicate test results for the same individual.
- Nurse call-back to healthcare providers for information completion and patient care resource connection.
Main Results:
- 47% of reactive HIV tests (1,401 individuals) were identified as duplicates, establishing the first-time positive results.
- The proportion of tests with unknown risk information decreased from 37% to 11% (p < 0.0001).
- The proportion of tests with unknown ethnic information decreased from 64% to 18% (p < 0.0001).
Conclusions:
- Enhanced non-nominal HIV surveillance is a practical approach to meet public health's need for epidemiological data.
- This methodology effectively balances the requirements for public health surveillance with the protection of patient privacy rights.
Keywords:
Health Care and Public Health