RESUMO
Background@#The advancement of information technology has immensely increased the quality and volume of health data. This has led to an increase in observational study, as well as to the threat of privacy invasion. Recently, a distributed research network based on the common data model (CDM) has emerged, enabling collaborative international medical research without sharing patient-level data. Although the CDM database for each institution is built inside a firewall, the risk of re-identification requires management. Hence, this study aims to elucidate the perceptions CDM users have towards CDM and risk management for re-identification. @*Methods@#The survey, targeted to answer specific in-depth questions on CDM, was conducted from October to November 2020. We targeted well-experienced researchers who actively use CDM. Basic statistics (total number and percent) were computed for all covariates. @*Results@#There were 33 valid respondents. Of these, 43.8% suggested additional anonymization was unnecessary beyond, “minimum cell count” policy, which obscures a cell with a value lower than certain number (usually 5) in shared results to minimize the liability of re-identification due to rare conditions. During extract-transform-load processes, 81.8% of respondents assumed structured data is under control from the risk of re-identification. However, respondents noted that date of birth and death were highly re-identifiable information. The majority of respondents (n = 22, 66.7%) conceded the possibility of identifier-contained unstructured data in the NOTE table. @*Conclusion@#Overall, CDM users generally attributed high reliability for privacy protection to the intrinsic nature of CDM. There was little demand for additional de-identification methods. However, unstructured data in the CDM were suspected to have risks. The necessity for a coordinating consortium to define and manage the re-identification risk of CDM was urged.
RESUMO
The aim of this study was to compare the novel human papillomavirus (HPV) detection method, the HPV 4 Auto-capillary Electrophoresis (ACE) test with the hybrid capture (HC) 2 assay for the detection of high-risk HPVs. In addition, we compared the HPV 4 ACE test with the polymerase chain reaction HPV Typing Set test for the detection of HPV 16 and HPV 18 genotypes. One hundred ninety-nine cervical swab samples obtained from women with previous abnormal Pap smears were subjected to testing with the three HPV tests. The HPV 4 ACE test and the HC 2 assay showed substantial agreement for detection of high-risk HPVs (85.4%, kappa=0.71). The HPV 4 ACE test also showed substantial agreement with the PCR HPV Typing Set test in the detection of HPV 16 and HP V 18 genotypes (89.9%, kappa=0.65). In correlation with cytologic results, the sensitivities and specificities of the HPV 4 ACE test and HC 2 assay were 92.9% vs. 92.9% and 48.1% vs. 50.8%, respectively, when high-grade squamous intraepithelial lesions were regarded as abnormal cytologies. The novel HPV 4 ACE test is a valuable tool for the detection of high-risk HPVs and for genotyping of HPV 16 and HPV 18.