Lee Terrence C, Saseendrakumar Bharanidharan Radha, Nayak Mahasweta, Chan Alison X, McDermott John J, Shahrvini Bita, Ye Gordon Y, Sitapati Amy M, Nebeker Camille, Baxter Sally L
Viterbi Family Department of Ophthalmology and Shiley Eye Institute, University of California, San Diego, La Jolla, California.
UCSD Health Department of Biomedical Informatics, University of California, San Diego, La Jolla, California.
Ophthalmol Sci. 2022 Jun;2(2). doi: 10.1016/j.xops.2022.100151. Epub 2022 Apr 5.
To quantify and characterize social determinants of health (SDoH) data coverage using single-center electronic health records (EHRs) and the National Institutes of Health All of Us research program.
Retrospective cohort study from June 2014 through June 2021.
Adults 18 years of age or older with a diagnosis of diabetic retinopathy, glaucoma, cataracts, or age-related macular degeneration.
For All of Us, research participants completed online survey forms as part of a nationwide prospective cohort study. In local EHRs, patients were selected based on diagnosis codes.
Social determinants of health data coverage, characterized by the proportion of each disease cohort with available data regarding demographics and socioeconomic factors.
In All of Us, we identified 23 806 unique adult patients, of whom 2246 had a diagnosis of diabetic retinopathy, 13 448 had a diagnosis of glaucoma, 6634 had a diagnosis of cataracts, and 1478 had a diagnosis of age-related macular degeneration. Survey completion rates were high (99.5%-100%) across all cohorts for demographic information, overall health, income, education, and lifestyle. However, health care access (12.7%-29.4%), housing (0.7%-1.1%), social isolation (0.2%-0.3%), and food security (0-0.1%) showed significantly lower response rates. In local EHRs, we identified 80 548 adult patients, of whom 6616 had a diagnosis of diabetic retinopathy, 26 793 had a diagnosis of glaucoma, 40 427 had a diagnosis of cataracts, and 6712 had a diagnosis of age-related macular degeneration. High data coverage was found across all cohorts for variables related to tobacco use (82.84%-89.07%), alcohol use (77.45%-83.66%), and intravenous drug use (84.76%-93.14%). However, low data coverage (< 50% completion) was found for all other variables, including education, finances, social isolation, stress, physical activity, food insecurity, and transportation. We used chi-square testing to assess whether the data coverage varied across different disease cohorts and found that all fields varied significantly (P < 0.001).
The limited and highly variable data coverage in both local EHRs and All of Us highlights the need for researchers and providers to develop SDoH data collection strategies and to assemble complete datasets.
使用单中心电子健康记录（EHR）和美国国立卫生研究院的“我们所有人”研究计划，对健康的社会决定因素（SDoH）数据覆盖情况进行量化和特征描述。
2014年6月至2021年6月的回顾性队列研究。
年龄在18岁及以上，诊断患有糖尿病性视网膜病变、青光眼、白内障或年龄相关性黄斑变性的成年人。
对于“我们所有人”研究计划，研究参与者作为全国性前瞻性队列研究的一部分完成在线调查问卷。在本地电子健康记录中，根据诊断编码选择患者。
健康的社会决定因素数据覆盖情况，以每个疾病队列中具有人口统计学和社会经济因素可用数据的比例为特征。
在“我们所有人”研究计划中，我们确定了23806名成年患者，其中2246人诊断患有糖尿病性视网膜病变，13448人诊断患有青光眼，6634人诊断患有白内障，1478人诊断患有年龄相关性黄斑变性。所有队列中，人口统计学信息、总体健康状况、收入、教育程度和生活方式的调查完成率都很高（99.5%-100%）。然而，医疗保健可及性（12.7%-29.4%）、住房（0.7%-1.1%）、社会隔离（0.2%-0.3%）和食品安全（0-0.1%）的回应率显著较低。在本地电子健康记录中，我们确定了80548名成年患者，其中6616人诊断患有糖尿病性视网膜病变，26793人诊断患有青光眼，40427人诊断患有白内障，6712人诊断患有年龄相关性黄斑变性。在所有队列中，与烟草使用（82.84%-89.07%）、酒精使用（77.45%-83.66%）和静脉药物使用（84.76%-93.14%）相关的变量数据覆盖率较高。然而，包括教育、财务、社会隔离、压力、身体活动、粮食不安全和交通在内的所有其他变量的数据覆盖率较低（完成率<50%）。我们使用卡方检验来评估不同疾病队列的数据覆盖率是否存在差异，发现所有领域均有显著差异（P<0.001）。
本地电子健康记录和“我们所有人”研究计划中有限且高度可变的数据覆盖情况凸显了研究人员和医疗服务提供者制定健康的社会决定因素数据收集策略并汇编完整数据集的必要性。
