Downloadable document (PDF) highlighting the current state of progress of the Hub
Briefing paper (November 2023)
We hope this finds you well despite the busyness – thanks for all that you do!
One recommendation of ‘The Best Start – A Five Year Forward Plan for Maternity and Neonatal Care in Scotland’ was to establish a Maternity and Neonatal Data Hub. Best Start also recommended that “…national level maternity and neonatal dashboards should be developed to facilitate benchmarking and reduce variations in care.”
Here’s a quick progress report on each of the Maternity and Neonatal Data Hub for Scotland’s five work streams:
1 Manage a visible Maternity and Neonatal Data Hub for Scotland partnership
The hub is a collaboration involving five delivery partners (the Scottish Perinatal Network, Healthcare Improvement Scotland, Scottish Government, National Records of Scotland, and Public Health Scotland). We are also maintaining links to colleagues undertaking similar national work in England, Wales, and Northern Ireland (via twice-yearly meetings of a 4-nation maternal data group we established), to UK-wide audits and with IT system suppliers.
Public Health Scotland recently established an Early Years and Young People Programme and the PHS-based Hub team are now part of that.
A Programme Board (with representation from all five partners) meets quarterly to discuss progress with new data acquisition and display. At the most recent meeting, last week, we discussed how a MatNeo Data Hub can continue after the Best Start Implementation Programme finishes next year. Programme Board members also discussed how we evaluate the impact of the MatNeo Data Hub.
With the assistance of the Scottish Perinatal Network we have established a web presence at https://perinatalnetwork.scot/data. Each of the hub’s workstreams is described, and links are provided to the resources that the hub has already developed. Take a look and let us know what you think using the e-mails at the foot of this message.
2 Align Maternity and Neonatal Data Collection, extraction, and data flow
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 have worked (intermittently) over the last couple of years with colleagues in National Services Scotland Digital and Security (DaS), with colleagues in NHS Boards, and with Clevermed (SystemC) – 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, this was delayed due to IT-development-capacity constraints within DaS. However, we are now restarting concerted work and should be able to confirm new timescales soon.
3 Establish new all-Scotland maternity data sets (Enhanced Maternity Dataset for Scotland; EMaDS)
During 2020 we established a new routine antenatal booking data collection (ABC). 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 created 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, (as already noted) this testing has been delayed by IT development capacity constraints and will probably not now happen until early 2024. In the meantime, we are working on matching data definitions with Clevermed and with NHS Lothian (who do not use BadgerNet maternity).
We have continued to explore how we can capture data on miscarriage from ‘early pregnancy’ settings. We have continued to develop detailed definitions for a draft miscarriage (early pregnancy) dataset, and are about to share these with the Scottish Digital Midwives group and a key ‘miscarriage’ contact nominated to Scottish Government in each board. We have also continued to establish how we can collect the data items included in the dataset from the electronic data already collected by ‘early pregnancy’ settings. We have been working with board contacts (and Scottish Government colleagues) to check some points from a survey run last year by Scottish Government about which services are using which clinical information systems. We will give an update on this work at a meeting about miscarriage organised by the Scottish Government in November.
4 Routine collection of data on specialist neonatal care (NeoCareIn+).
We developed a dataset for routine submission some time ago. We are still discussing with Clevermed (and NHS National Services Scotland) how we can have this dataset routinely available via an automated route and how data will be stored in PHS.
5 Data displays showing maternity and neonatal dashboard COREs
We previously developed CORE maternity measures for incorporation into maternity dashboards. In 2020, Public Health Scotland (PHS) created a data dashboard to monitor wider impacts of COVID-19 and we used that dashboard to present data on several aspects of maternity care in Scotland. ‘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. Thanks to all of you who provided comments on a preview ‘beta’ version over the summer.
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. As well as containing a list of the CORE maternity measures, this catalogues individual maternity and neonatal measures already available, including those on the Scottish Pregnancy, Births and Neonatal Data (SPBAND) Dashboard, Discovery, NMPA, NNAP and PHS websites. Although it is easy to edit, we appreciate the Google Sheets platform may not be available to all our users. However, if you cannot access Google Sheets and would like to view the Topics Index, please contact the Hub Programme Team (firstname.lastname@example.org) and we will share the latest index with you.
Our colleagues in the maternity analytical team in Public Health Scotland publish a series of annual Official Statistics on pregnancy, childbirth and the early care of babies born in Scotland.
Thank you for reading this update. If you have any queries or comments, please do get in touch and we will be happy to help you further.
Alastair (on behalf of the MatNeo Data Hub team)
You can also contact us via our generic email address: email@example.com