Ni Michael Y, Li Tom K, Hui Rex W H, McDowell Ian, Leung Gabriel M
School of Public Health, Li Ka Shing Faculty of Medicine, The University of Hong Kong, 7 Sassoon Road, Hong Kong, China.
School of Public Health, Li Ka Shing Faculty of Medicine, The University of Hong Kong, 7 Sassoon Road, Hong Kong, China.
J Clin Epidemiol. 2017 Apr;84:142-149. doi: 10.1016/j.jclinepi.2017.01.003. Epub 2017 Jan 20.
It is unclear if unique personal identifiers should be requested from participants for health record linkage: this permits high-quality data linkage but at the potential cost of lower consent rates due to privacy concerns.
Drawing from a sampling frame based on the FAMILY Cohort, using a 2 × 2 factorial design, we randomly assigned 1,200 participants to (1) request for Hong Kong Identity Card number (HKID) or no request and (2) receiving a souvenir incentive (valued at USD4) or no incentive. The primary outcome was consent to health record linkage. We also investigated associations between demographics, health status, and postal reminders with consent.
Overall, we received signed consent forms from 33.3% (95% confidence interval [CI] 30.6-36.0%) of respondents. We did not find an overall effect of requesting HKID (-4.3%, 95% CI -9.8% to 1.2%) or offering souvenir incentives (2.4%, 95% CI -3.1% to 7.9%) on consent to linkage. In subgroup analyses, requesting HKID significantly reduced consent among adults aged 18-44 years (odds ratio [OR] 0.53, 95% CI 0.30-0.94, compared to no request). Souvenir incentives increased consent among women (OR 1.55, 95% CI 1.13-2.11, compared to no souvenirs).
Requesting a unique personal identifier or providing a souvenir incentive did not affect overall consent to health record linkage.
对于是否应向参与者索要唯一的个人标识符以进行健康记录关联尚不清楚：这能实现高质量的数据关联，但可能因隐私担忧而导致同意率降低。
基于家庭队列的抽样框架，采用2×2析因设计，我们将1200名参与者随机分配为：（1）索要香港身份证号码（HKID）或不索要；（2）给予纪念品激励（价值4美元）或不给予激励。主要结果是对健康记录关联的同意情况。我们还研究了人口统计学特征、健康状况以及邮寄提醒与同意之间的关联。
总体而言，我们收到了33.3%（95%置信区间[CI] 30.6 - 36.0%）的受访者签署的同意书。我们未发现索要HKID（-4.3%，95% CI -9.8%至1.2%）或提供纪念品激励（2.4%，95% CI -3.1%至7.9%）对关联同意率有总体影响。在亚组分析中，索要HKID显著降低了18 - 44岁成年人的同意率（优势比[OR] 0.53，95% CI 0.30 - 0.94，与不索要相比）。纪念品激励提高了女性的同意率（OR 1.55，95% CI 1.13 - 2.11，与不提供纪念品相比）。
索要唯一的个人标识符或提供纪念品激励并未影响对健康记录关联的总体同意率。
