Linking databases on perinatal health: a review of the literature and current practices in Europe

Abstract

Background: International comparisons of perinatal health indicators are complicated by the heterogeneity of data sources on pregnancy, maternal and neonatal outcomes. Record linkage can extend the range of data items available and thus can improve the validity and quality of routine data. We sought to assess the extent to which data are linked routinely for perinatal health research and reporting. Methods: We conducted a systematic review of the literature by searching PubMed for perinatal health studies from 2001 to 2011 based on linkage of routine data (data collected continuously at various time intervals). We also surveyed European health monitoring professionals about use of linkage for national perinatal health surveillance. Results: 516 studies fit our inclusion criteria. Denmark, Finland, Norway and Sweden, the US and the UK contributed 76% of the publications; a further 29 countries contributed at least one publication. Most studies linked vital statistics, hospital records, medical birth registries and cohort data. Other sources were specific registers for: cancer (70), congenital anomalies (56), ART (19), census (19), health professionals (37), insurance (22) prescription (31), and level of education (18). Eighteen of 29 countries (62%) reported linking data for routine perinatal health monitoring. Conclusion: Research using linkage is concentrated in a few countries and is not widely practiced in Europe. Broader adoption of data linkage could yield substantial gains for perinatal health research and surveillance.

Innovative use of data sources: a cross-sectional study of data linkage and artificial intelligence practices across European countries

“…A systematic review has shown that data linkage is used in the field of perinatal health for both health surveillance and research purposes in European countries [8]. Several other studies have shown that linkage is used to explore various dynamics of population health such as social care, psychotic disorders, multi-morbidity, diabetes, obesity, mental health, cardiovascular, antibiotic use and Alzheimer using data linkage with different types of administrative data sources (both related to health and non-health) [7,[18][19][20][21][22][23][24][25][26][27][28][29][30].…”

“…This methodology potentiate the capacity to study disease burden and progression, risk factors, care pathways and long-term outcomes for public health research and health surveillance [1]. Many countries have already invested in data linkage to improve their health information system [8], but there are wide differences in capacity across European countries to perform data linkage in routine. However, linked administrative data can be complex to use and may require advanced expertise and skills in statistical analysis [9].…”

Quality of IVF status registration in the Estonian Medical Birth Registry: a national record linkage study

“…Similarly, nearly a quarter of missing IVF entries was found in the Finnish Medical Birth Registry after linkage with insurance reimbursement files, drug prescriptions and IVF statistics [ 19 ]. Given that data from medical birth registries are often used to compare perinatal outcome and subsequent health of IVF babies with that of their counterparts conceived spontaneously [ 20 – 22 ], under-registration of IVF status biases effect measures.…”

A step‐wise approach to developing indicators to compare the performance of maternity units using hospital administrative data

“…Similar initiatives based on routine data linkage exist in Australia . A recent systematic review found that broader adoption of routine data linkage of perinatal health databases could yield substantial gains for research and surveillance . It therefore seems likely that, despite the inherent challenges of using these data, there will be a reliance on maternity indicators based, at least in part, on administrative data for some time to come.…”