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Record linkage research and informed consent: who consents?
Nicole Huang1, Shu-Fang Shih, Hsing-Yi Chang
1Institute of Public Health, School of Medicine, National Yang-Ming University, Taipei 112, Taiwan, ROC. syhuang@ym.edu.tw <syhuang@ym.edu.tw>
BMC Health Services Research
|February 13, 2007
Summary
In Taiwan, 88% of adults consented to link health insurance records with survey data. However, significant differences in age, education, and ethnicity between consenters and non-consenters may introduce research bias.
Area of Science:
- Health Services Research
- Public Health
- Biostatistics
Background:
- Linking health insurance records with survey data is common in health services research.
- Written informed consent can introduce research biases if not universally obtained.
- This study examines consent patterns for data linkage in Taiwan.
Purpose of the Study:
- To compare characteristics of individuals who consented versus refused linkage of their health insurance and survey data.
- To assess potential selection bias introduced by differential consent rates in a Taiwanese population.
Main Methods:
- A national representative sample of 14,611 adults from the Taiwan National Health Interview Survey (NHIS) was analyzed.
- Respondents were asked for permission to access their National Health Insurance records post-survey.
- Logistic regression was used to identify factors associated with consent.
Main Results:
- 88% of participants (12,911) consented to data linkage, while 12% (1,700) refused.
- Elderly, illiterate, low-income, and suburban residents were more likely to refuse consent.
- Aboriginal individuals were less likely to refuse; no gender or self-reported health differences were found.
Conclusions:
- Taiwan's high consent rate (88%) for linking health insurance and survey data aligns with Western findings.
- Significant demographic differences exist between consenters and non-consenters, indicating potential selection bias.
- Researchers must consider and investigate the impact of this selection bias in studies utilizing linked data.
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