Atkins Christopher A, Nellis Joseph R, Vekstein Andrew M, D'Ottavio Alfred, DeLaRosa Jesse M, Chiswell Karen, Turek Joseph W, Beckerman Ziv, Raskind Hood Cheryl, Book Wendy M, Hoffman Timothy M, Hartman Robert J, Walsh Michael, Li Jennifer S, Welke Karl F
Division of Cardiology, Department of Pediatrics, Duke University Medical Center, Durham, NC, USA.
Division of Cardiovascular and Thoracic Surgery, Department of Surgery, Duke University Medical Center, Durham, NC, USA.
Cardiol Young. 2024 Dec;34(12):2570-2576. doi: 10.1017/S1047951124026520. Epub 2024 Oct 8.
Society of Thoracic Surgeons Congenital Heart Surgery Database is the largest congenital heart surgery database worldwide but does not provide information beyond primary episode of care. Linkage to hospital electronic health records would capture complications and comorbidities along with long-term outcomes for patients with CHD surgeries. The current study explores linkage success between Society of Thoracic Surgeons Congenital Heart Surgery Database and electronic health record data in North Carolina and Georgia.
The Society of Thoracic Surgeons Congenital Heart Surgery Database was linked to hospital electronic health records from four North Carolina congenital heart surgery using indirect identifiers like date of birth, sex, admission, and discharge dates, from 2008 to 2013. Indirect linkage was performed at the admissions level and compared to two other linkages using a "direct identifier," medical record number: (1) linkage between Society of Thoracic Surgeons Congenital Heart Surgery Database and electronic health records from a subset of patients from one North Carolina institution and (2) linkage between Society of Thoracic Surgeons data from two Georgia facilities and Georgia's CHD repository, which also uses direct identifiers for linkage.
Indirect identifiers successfully linked 79% (3692/4685) of Society of Thoracic Surgeons Congenital Heart Surgery Database admissions across four North Carolina hospitals. Direct linkage techniques successfully matched Society of Thoracic Surgeons Congenital Heart Surgery Database to 90.2% of electronic health records from the North Carolina subsample. Linkage between Society of Thoracic Surgeons and Georgia's CHD repository was 99.5% (7,544/7,585).
Linkage methodology was successfully demonstrated between surgical data and hospital-based electronic health records in North Carolina and Georgia, uniting granular procedural details with clinical, developmental, and economic data. Indirect identifiers linked most patients, consistent with similar linkages in adult populations. Future directions include applying these linkage techniques with other data sources and exploring long-term outcomes in linked populations.
胸外科医师协会先天性心脏病手术数据库是全球最大的先天性心脏病手术数据库，但不提供初次治疗以外的信息。与医院电子健康记录相链接可以获取先天性心脏病手术患者的并发症、合并症以及长期预后情况。本研究探讨了胸外科医师协会先天性心脏病手术数据库与北卡罗来纳州和佐治亚州电子健康记录数据之间的链接成功率。
利用出生日期、性别、入院和出院日期等间接标识符，将胸外科医师协会先天性心脏病手术数据库与2008年至2013年期间北卡罗来纳州四家先天性心脏病手术医院的电子健康记录相链接。间接链接在入院层面进行，并与使用“直接标识符”（病历号）的另外两种链接进行比较：（1）胸外科医师协会先天性心脏病手术数据库与北卡罗来纳州一家机构部分患者的电子健康记录之间的链接；（2）佐治亚州两家机构的胸外科医师协会数据与佐治亚州先天性心脏病数据库之间的链接，该数据库也使用直接标识符进行链接。
间接标识符成功链接了北卡罗来纳州四家医院中79%（3692/4685）的胸外科医师协会先天性心脏病手术数据库入院病例。直接链接技术成功将胸外科医师协会先天性心脏病手术数据库与北卡罗来纳州子样本中90.2%的电子健康记录相匹配。胸外科医师协会与佐治亚州先天性心脏病数据库之间的链接率为99.5%（7544/7585）。
在北卡罗来纳州和佐治亚州，手术数据与基于医院的电子健康记录之间的链接方法得到了成功验证，将详细的手术细节与临床、发育和经济数据结合在一起。间接标识符链接了大多数患者，这与成年人群中的类似链接情况一致。未来的方向包括将这些链接技术应用于其他数据源，并探索链接人群的长期预后情况。
