As well as managing the inter-dependencies among the projects described below, we convene a partnership involving collaboration among the five delivery partners.
We are also linking to colleagues undertaking similar national work in England, Wales and Northern Ireland (via a 4-nation maternal data group we established), to UK-wide audits and with IT system suppliers.
Within this workstream we provide regular updates to stakeholders about the programme and conduct stakeholder surveys. Your feedback allows us to improve the MatNeo Data Hub, to make it more beneficial to our users.
We have reviewed a comprehensive list of nationally-collected (all-Scotland) datasets for maternity & neonatal care to identify data items that are either duplicated (same thing collected in same way in multiple datasets) or divergent (same thing collected in multiple datasets in similar but different ways). Somewhat surprisingly, we discovered that there is less duplication and divergence at the data item level than we expected. At the end of 2019 we confirmed, through a limited consultation, that we hadn’t missed anything important.
The Maternity and Neonatal Data Access Liaison Group for Scotland (MaNDALS) was established to share updates from multiple parallel conversations involving organisations who require all-Scotland-consistent data for national purposes from clinical information systems (mainly BadgerNet), and to align these conversations. The group met again in November 2024.
We have developed a secure, automated mechanism to routinely transfer nationally-consistent maternity and neonatal data from BadgerNet systems into Public Health Scotland (PHS). We worked on this with colleagues in National Services Scotland Digital and Security (NSS: DaS) and with System C who provide the BadgerNet systems. The first data to be accessed in this way is antenatal booking and neonatal care data.
To support this, and after a lengthy set of negotiations, we have signed a Data Services Agreement between PHS and System C. This agreement will facilitate access to maternity and neonatal data that System C hold on behalf of Scottish NHS boards, where boards ask System C to allow access.
Throughout 2019 we reviewed the national maternity data return (SMR02) and the Scottish Birth Record (SBR; national baby data set), with a view to developing enhanced future maternity and baby data sets that align to current service delivery, and provide more consistent data on maternity care, births and babies.
With the onset of the COVID-19 pandemic we refocussed our Enhanced Maternity Dataset for Scotland (EMaDS) work to capture close-to-real-time data on aspects of antenatal booking. We were already proposing to separate the collection of antenatal booking data from collection of data on births (and other ends-of-pregnancy). We decided to dramatically accelerate that, and developed an Antenatal Booking Collection (ABC) data set (as an early implementation of a module of EMaDS). We established weekly reporting for antenatal booking data, and received historic data back to April 2019, so we could report on all women pregnant in March 20 (and thereafter).
We have now established the Antenatal Booking Collection as a routine and enduring all-Scotland data collection. Numbers of pregnancies booked, and gestation at booking, based on ABC data are presented on the Scottish Pregnancy, Births and Neonatal Data (SPBAND) Dashboard. Official Statistics on numbers of pregnancies booked, gestation at booking, and smoking status, sourced from the Antenatal Booking Collection, are also published annually in the Antenatal Booking in Scotland publication.
ABC data is used to maintain a dynamic pregnancy cohort for linkage studies (the Scottish Linked Pregnancy and Baby Dataset, SLiPBD). SLiPBD is described in a data resource profile published in July 2024. A similar dynamic pregnancy cohort was used (in the COVID-19 in Pregnancy in Scotland (COPS) study) to monitor COVID vaccine uptake in pregnant women and investigate the effect of COVID-19 infection (and COVID-19 vaccination) on outcomes for mothers and babies. SLiPBD is now allowing PHS to do studies on medicines use in pregnancy. SLiPBD data also allows us to estimate how many people were pregnant at a point in time and therefore eligible for antenatal screening and immunisations.
PHS have created an expanded version 2 of the Antenatal Booking Collection (ABC2). We have also developed a Mother, Birth and Baby (MoBBa) dataset. MoBBa is intended to be deployed alongside the existing SMR02 to gather additional data on mothers, births and babies that is not included in SMR02. We plan to assess if ABC2 and MoBBa are fit-for-purpose by receiving one-off data transfers for each dataset. This has been delayed by us prioritising work to automate access to antenatal booking and neonatal care data. However, extraction scripts have now been prepared, we have developed an analytical plan and we should receive data early in 2025.
We have continued to explore how we can capture data on miscarriage from ‘early pregnancy’ settings. A miscarriage (early pregnancy) dataset was previously reviewed by key contacts and Digital Midwives. Since most Health Boards use BadgerNet systems, we are exploring, with System C, how to access relevant data from BadgerNet Maternity and the BadgerNet Early Pregnancy and Gynaecology Unit (EPAGU) module. We intend to assess if the miscarriage (early pregnancy) dataset is fit-for-purpose by obtaining a one-off sample of the data. We are collecting permissions to do this and hope to receive the sample data in early 2025. We are also continuing to liaise with NHS Lothian to obtain required data items from Trak maternity.
Tobacco dependency remains the single biggest modifiable determinant of harm in pregnancy. PHS is actively working to improve the quality of data we collect on tobacco dependency in pregnancy: to understand where, and for whom, need for support is greatest and the impact of interventions to prevent tobacco-related harm. This complements work underway with midwifes and local public health teams providing tobacco-dependency treatment to collectively consider how we ensure optimal delivery of treatment pathways and services in pregnancy.
We are working to establish routine collection of a new national (all-Scotland) minimum dataset on specialist neonatal care (NeoCareIn+).
In November 2019 we received a one-off extract of data from BadgerNet Neonatal and we analysed this to see what we could learn, and what changes we might need to make to the draft dataset we developed in 2018/19.
We have been working with NHS National Services Scotland and System C to make the content of the NeoCareIn+ dataset routinely available via the secure, automated mechanism mentioned earlier on this page. We have now enabled this secure mechanism to access BadgerNet Neonatal data (for babies receiving care in neonatal units on, and/or after, 01 January 2018). We need to check that data loads as expected onto the data platform, assess data completeness and conduct initial analyses. So, we do not anticipate routine outputs (either public or for the neonatal network) will be available until mid-2025.
We have developed CORE maternity measures for incorporation into maternity dashboards. This supports Commitment 67 in Best Start: “National level maternity and neonatal dashboards should be developed to facilitate benchmarking and reduce variations in care”. Such measures, using all-Scotland-comparable data, support individual services and regional collaborations to learn from each other’s experience. To develop the initial list of CORE maternity measures we first explored WHAT measures are used in a variety of local and national dashboards. From this we made recommendations that were discussed in November 2019 with a short life working group. The working group contained representation from Heads of Midwifery, Clinical Directors of Obstetrics, the Scottish Perinatal Network and the Best Start Implementation Programme.
From 2020 many of the CORE maternity measures were presented on a Wider Impacts (of COVID) dashboard. Pregnancy and Births and babies sections of the Wider Impacts dashboard were updated each month until Sep 2023. Those two sections were replaced in October 2023 by a new Scottish Pregnancy, Births and Neonatal Data (SPBAND) Dashboard. Data on SPBAND is refreshed quarterly (in January, April, July and October each year).
SPBAND includes the same topics as those that featured in the two sections of the Wider Impacts dashboard it replaces:
SPBAND offers three ways to view data: time series charts for individual measures and individual Health Boards; small multiple time series charts, to allow comparison (for a particular measure) across Health Board areas, and a multi-indicator overview that displays multiple measures simultaneously, allowing comparison across Health Board areas.
The Health in the Early Years in Scotland (HEYS) dashboard includes information on infant feeding. Data is refreshed quarterly (in January, April, July and October each year). A link to data on HEYS is available from the Infant feeding menu item on SPBAND.
We are continuing to maintain a topics index, which catalogues individual maternity and neonatal measures already available. The Topics Index also includes an up-to-date list of the maternity CORE measures and where to find data on these. More details are given on the web resources page.
Each year our colleagues in the maternity analytical team in Public Health Scotland publish a series of Official Statistics on pregnancy, childbirth and the early care of babies born in Scotland. See the web resources page for links to these.