1. Please tell us about your background and your broad research interests.

I am a researcher at both the ARC South London and ARC West Midlands undertaking research into maternity and perinatal mental health using data obtained from electronic health records. To date, my research has looked at the effects of maternal health on child outcomes with a specific focus on maternal mental health during pregnancy.

My current research uses large datasets of electronic patient records from maternity and mental health care to inform improvements in maternity care for women and their babies experiencing social and health inequalities.

2. Can you explain what data linkage is and how you are using it to research health inequalities in pregnancy and improve outcomes for babies?

In summary, data linkage is the process through which two or more independent databases that store an individual’s data can be linked together and de-identified. This data can then be used for research purposes.

Animation created by a multidisciplinary team at the NIHR Maudsley Biomedical Research Centre (BRC), illustrating the process of data linkage and its benefits.

In healthcare specifically, medical records for one person are often on several different electronic systems. These systems are often not integrated and do not talk to each other, which is problematic for both providing care and research purposes.

Data linkage research is currently being used within the ARC South London Maternity and Perinatal Mental Health theme, through a programme called the Early Life Cross Linkage in Research (eLIXIR) Partnership.

Linked maternity, neonatal and maternal mental health records were created to support research into the early life origins of physical and mental health of mothers and children.

Electronic health records provide potentially transformative information for life course research, integrating physical and mental health disorders and outcomes in routine clinical care. 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.

This is the first time that we have been able to follow women and their babies through our health care systems in south London, to look at the impact of the care that they received, and also to examine the impact of pre-existing disease and social inequalities on their outcomes. Read more about eLIXIR →

3. What are the challenges with using data linkage to carry out this type of research?

The main challenge of this research is that the data we access is often stored in lots of different places such as different NHS Trusts. Therefore, we work closely with our colleagues at our partner sites to ensure the data we need is extracted correctly and all linked together into one large data warehouse.

To do this, we work with the Clinical Data Linkage Services (CDLS) who are experts in this field.

4. How will using data linkage give us a full picture of the different problems women could be facing in pregnancy during Covid-19?

The Covid-19 pandemic has not only altered our personal lives dramatically since March 2020 but also has altered the research landscape. All non-critical in-person research studies and laboratory research were put on hold until it was safe to continue again.

We are able to obtain rich data about health services during this period which allows us to have an early glimpse into the impact that the pandemic is having on the clinical services and service users. Within the team’s research, we are able to see the impact of the pandemic on maternity care service users — for example, the impact of the Covid-19 pandemic on the health and care of women experiencing mental illness and domestic violence and abuse, during pregnancy.

Within ARC South London, there is research currently underway to look at the effects of Covid-19 on the reporting and rates of domestic violence and mental health referrals, and the impact of inequalities and deprivation within the maternity service user population using eLIXIR.

5. What do you hope this research will achieve that wasn’t previously possible without access to data linkage technology?

Much of the research looking at the ‘life course approach’ to disease prevention from pregnancy and infancy onwards has been developed from large birth cohorts, such as the Avon Longitudinal Study of Parents and Children and Born in Bradford. However, these directly recruited cohorts are by definition drawn from individuals recruited over a prespecified and limited time period and therefore become rapidly outdated when there are changes in population demography, lifestyle, and ethnicity.

Additionally, these cohorts are expensive to establish and sustain, with high dropout rates which can introduce biases — for example, lower levels of engagement in participants with mental health conditions. Direct patient recruitment may also result in cohorts with a limited representation of the target population because some societal groups are less likely to take part in research projects (selective inclusion).

Using linked data from health records therefore provides an effective alternative: