Downloadable document (PDF) highlighting the current state of progress of the Hub
Briefing paper (August 2024)
Dear Colleagues,
We hope that this finds you well, and that you managed some down time over the summer period.
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 over the last six months:
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 (PHS). 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).
Until June 2024 a Programme Board (with representation from all five partners) met quarterly to discuss progress. The PHS-based MatNeo Data Hub team are now part of the PHS cross-organisational Early Years and Young People (EY&YP) Programme. So the governance of the MatNeo Data Hub has shifted to run through the PHS EY&YP programme too.
The Best Start Implementation Programme is now finishing. We contributed a section to an end-of-programme report that summarised progress and impact. This included some very positive feedback from users of resources developed by the MatNeo Data Hub. We’d love to hear what you’ve found most useful. Let us know using the e-mails at the foot of this message.
With the assistance of the Scottish Perinatal Network we are still maintaining a web presence at https://perinatalnetwork.scot/data. Links are provided to the resources that the hub has already developed.
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 mid November 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 will confirm soon when the new automated data flow (initially for the current antenatal booking collection dataset) 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.
3 Establish new all-Scotland maternity data sets (Enhanced Maternity Dataset for Scotland; EMaDS)
During 2020 PHS established a new routine antenatal booking data collection (ABC). 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 (most recently on 26 March 2024).
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 recently published data resource profile. 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. This allowed PHS to publish statistics at the end of April 2024 on coverage and results of the fetal trisomy screening programme (pregnancy screening for Down’s Syndrome, Edward’s Syndrome, and Patau’s Syndrome) in Scotland.
ABC data is currently sent by System C each week by a fairly manual secure file transfer. We are close to automating that data flow (see workstream 2 update above). ABC data from NHS Lothian (who do not use BadgerNet Maternity) is now being automatically transferred.
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 still plan to assess if ABC2 and MoBBa are fit-for-purpose by obtaining one-off data transfers for each dataset. This has been delayed by us prioritising other work but should happen by December 2024.
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 discussing, with clinical and reporting specialists in System C, how to access relevant data from BadgerNet Maternity and the BadgerNet Early Pregnancy and Gynaecology Unit (EPAGU) module. We are also continuing to liaise with NHS Lothian to obtain required data items from Trak maternity. We are completing a detailed item-by-item review of data items, definitions and potential mappings to BadgerNet and Trak maternity fields. The miscarriage dataset now aligns with the ABC and MoBBa datasets.
Tobacco dependency remains the single biggest modifiable determinant of harm in pregnancy. PHS is currently 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.
4 Routine collection of data on specialist neonatal care (NeoCareIn+)
PHS developed a dataset for routine submission some time ago. We are working with System C (and NHS National Services Scotland) to make this dataset routinely available via the same automated route described for antenatal booking data earlier in this update.
5 Data displays showing maternity and neonatal CORE measures
We previously agreed CORE maternity measures for incorporation into maternity dashboards. 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.
We introduced some improvements to the way data is presented on SPBAND from July 2024. These include adding gestation at termination charts for the combined island boards and (because the dots were beginning to coalesce) removing data dots from the board comparison line chart displays of gestation at booking and gestation at termination. Since the pandemic period for COVID is now several years ago, we plan, in October 2024, to introduce a post-pandemic average comparison line to the SPBAND charts showing monthly data for gestation at booking and gestation at termination. We intend to introduce post-pandemic average comparison lines for Births and Babies measures shown quarterly once we have enough post-pandemic periods (so not till mid 2025).
The Health in the Early Years in Scotland (HEYS) dashboard includes information on infant feeding. Data is refreshed quarterly, most recently on 02 July 2024. A link to data on HEYS is available from the Infant feeding menu item on SPBAND.
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, Health in the Early Years in Scotland, 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 phs.matneodatahub@phs.scot 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.
What do you think about these (and other PHS) statistical publications? PHS is currently running a consultation inviting users of our statistics to give their views on how we publish our statistics and make data available. The survey will be live until 27 Sep 2024. Updates about next steps and proposed way forward will be published once all survey responses have been analysed.
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.
Very best wishes
Alastair (on behalf of the MatNeo Data Hub team; alastair.philp2@phs.scot)
You can also contact us via our generic email address: phs.matneodatahub@phs.scot