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 will meet again in spring 2024.
After frustrating delays due to IT-development-capacity constraints, we are close to implementing an automated way to routinely bring nationally-consistent maternity and neonatal data from clinical systems into Public Health Scotland (PHS). We are working intensively on this with colleagues in National Services Scotland Digital and Security (NSS: DaS), with colleagues in NHS Boards, and with System C (who acquired Clevermed in February 2023 and who provide the BadgerNet systems). We have agreed that the secure automated data transfer will work by queries being sent to a System-C-hosted database, with data then pulled into a new maternity and neonatal data store hosted by NSS DaS. We will confirm soon when the new automated data flows will start.
To support this, and after a lengthy set of negotiations, we are also close to concluding 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). This dynamic cohort approach 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 will be deployed alongside the existing SMR02 to gather additional data on mothers, births and babies that is not included in SMR02. We have continued to work on finalising data mapping and data definitions for ABC2 and MoBBa with System C and with NHS Lothian. We plan to assess if ABC2 and MoBBa are fit-for-purpose by obtaining one-off data transfers for each dataset. This should happen by September 2024.
We have continued to explore how we can capture data on miscarriage from ‘early pregnancy’ settings. We received positive feedback on a draft dataset from Digital Midwives in late 2023. Since most Health Boards use BadgerNet systems we have been discussing, with clinical and reporting specialists in System C, where the data items included in the draft dataset are recorded within BadgerNet Maternity and the BadgerNet Early Pregnancy and Gynaecology Unit (EPAGU) module. Similar discussions are under way with colleagues in NHS Lothian, who use Trak maternity.
We are working to establish routine collection of a new national (all-Scotland) minimum dataset on specialist neonatal care.
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 now have a dataset suitable for routine submission. We are working with System C (and NHS National Services Scotland) to make this dataset routinely available via the same automated route described earlier on this page.
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:
The Health in the Early Years in Scotland (HEYS) dashboard was published for the first time on 16 January 2024 and includes information on infant feeding. Data will be refreshed quarterly. A link to data on HEYS is now available from a new Infant feeding menu item on SPBAND.
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.
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.
A MatNeo Data Hub Programme Board, with representatives from each delivery partner, meets quarterly to discuss programme activities and plans.
The MatNeo Data Hub is overseen by the Evidence & Data sub-group of the Best Start Programme Board.