Carson Lauren E, Azmi Borscha, Jewell Amelia, Taylor Clare L, Flynn Angela, Gill Carolyn, Broadbent Matthew, Howard Louise, Stewart Robert, Poston Lucilla
Department of Psychological Medicine, Institute of Psychiatry Psychology and Neuroscience, King's College London, London, UK
Department of Psychological Medicine, Institute of Psychiatry Psychology and Neuroscience, King's College London, London, UK.
BMJ Open. 2020 Oct 6;10(10):e039583. doi: 10.1136/bmjopen-2020-039583.
Linked maternity, neonatal and maternal mental health records were created to support research into the early life origins of physical and mental health, in mothers and children. The Early Life Cross Linkage in Research (eLIXIR) Partnership was developed in 2018, generating a repository of real-time, pseudonymised, structured data derived from the electronic health record systems of two acute and one Mental Health Care National Health Service (NHS) Provider in South London. We present early descriptive data for the linkage database and the robust data security and governance structures, and describe the intended expansion of the database from its original development. Additionally, we report details of the accompanying eLIXIR Research Tissue Bank of maternal and neonatal blood samples.
Descriptive data were generated from the eLIXIR database from 1 October 2018 to 30 June 2019. Over 17 000 electronic patient records were included.
10 207 women accessed antenatal care from the 2 NHS maternity services, with 8405 deliveries (8772 infants). This diverse, inner-city maternity service population was born in over 170 countries with an ethnic profile of 46.1% white, 19.1% black, 7.0% Asian, 4.1% mixed and 4.1% other. Of the 10 207 women, 11.6% had a clinical record in mental health services with 3.0% being treated during their pregnancy. This first data extract included 947 infants treated in the neonatal intensive care unit, of whom 19.1% were postnatal transfers from external healthcare providers.
Electronic health records provide potentially transformative information for life course research, integrating physical and mental health disorders and outcomes in routine clinical care. The eLIXIR database will grow by ~14 000 new maternity cases annually, in addition to providing child follow-up data. Additional datasets will supplement the current linkage from other local and national resources, including primary care and hospital inpatient data for mothers and their children.
创建关联的孕产妇、新生儿和孕产妇心理健康记录，以支持对母亲和儿童身心健康的早期生命起源的研究。2018年成立了早期生命研究交叉链接（eLIXIR）伙伴关系，生成了一个实时、化名、结构化数据存储库，该数据来自伦敦南部两家急症医院和一家心理健康护理国民保健服务（NHS）提供商的电子健康记录系统。我们展示了链接数据库的早期描述性数据以及强大的数据安全和治理结构，并描述了数据库从最初开发开始的预期扩展。此外，我们报告了随附的eLIXIR孕产妇和新生儿血样研究组织库的详细信息。
描述性数据来自2018年10月1日至2019年6月30日的eLIXIR数据库。纳入了超过17000份电子病历。
10207名妇女接受了两家NHS产科服务的产前护理，分娩8405例（8772名婴儿）。这个多样化的市中心产科服务人群出生于170多个国家，种族分布为46.1%白人、19.1%黑人、7.0%亚洲人、4.1%混血和4.1%其他种族。在这10207名妇女中，11.6%有心理健康服务的临床记录，其中3.0%在孕期接受治疗。这份首批数据摘录包括947名在新生儿重症监护病房接受治疗的婴儿，其中19.1%是从外部医疗服务提供者处产后转诊而来。
电子健康记录为生命历程研究提供了潜在的变革性信息，将身心健康障碍和结果整合到常规临床护理中。eLIXIR数据库每年将新增约14000例产科病例，此外还将提供儿童随访数据。其他数据集将补充目前来自其他地方和国家资源的链接，包括母亲及其子女的初级保健和医院住院数据。
