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 November 2023.
We are working with National Services Scotland Digital and Security (DaS) colleagues, with colleagues in NHS Boards, and with Clevermed – who provide the BadgerNet systems – to develop an automated way to bring nationally-consistent maternity and neonatal data from clinical systems into Public Health Scotland (PHS).
Unfortunately, progress slowed during 2023 due to IT-development-capacity constraints within National Services Scotland Digital and Security (DaS). However, we are now restarting concerted work and should be able to confirm new timescales soon.
We continue to consider how data quality (completeness and consistency) can be ensured when data is sourced from clinical systems. We have had a series of meetings with Clevermed to explore how reminders can be provided within BadgerNet to complete data fields that contribute to national data, and how data completeness reports for boards can be provided.
The slow progress with IT has delayed completion of commercial negotiations with Clevermed (now part of System C Healthcare) on a data services agreement. This agreement will facilitate access to maternity and neonatal data that Clevermed hold on behalf of Scottish NHS boards, where boards ask Clevermed 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 bookings, and gestation at booking, using 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. Furthermore, ABC data is being 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. Such cohorts also allow us to do studies on medicines use in pregnant women, which are now starting. Finally, ABC data allows us to know how many women are pregnant at a point in time and therefore eligible for antenatal screening and immunisations.
PHS have finalised an expanded version 2 of the Antenatal Booking Collection (ABC2). We have also developed a Mother, Birth and Baby (MoBBa) dataset. This will be deployed alongside the existing SMR02 to gather additional data on mothers, births and babies that is not included in SMR02. We still plan to test both ABC2 and MoBBa through one-off data transfers. However, this has been delayed by IT development capacity constraints and will probably not now happen until early 2024.
We have continued to explore how we can capture data on miscarriage from ‘early pregnancy’ settings. We have developed detailed definitions for a draft miscarriage (early pregnancy) dataset and are sharing these with the Scottish Digital Midwives group. Now that we have a draft dataset, we need to establish how we can collect that data. We want to access electronic data already collected by ‘early pregnancy’ settings. We have used information from a survey run in 2022 by Scottish Government to learn which services are using which clinical information systems. We have initiated discussions with Clevermed about how data on miscarriage is collected and stored within BadgerNet 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 still discussing with Clevermed (and NHS Boards) how we can have this dataset routinely available and how data will be stored in PHS.
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, will 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. However those sections have now been replaced by a new Scottish Pregnancy, Births and Neonatal Data (SPBAND) Dashboard, which was published for the first time on 3 October 2023 and will be updated quarterly.
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.
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.
We are also considering with Programme Board partners how new displays we produce can be maintained, and reviewed regularly by relevant national organisations. We have made some changes to the access-controlled Discovery dashboard, including using ABC data for monitoring gestation at booking.
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.