Downloadable document (PDF) highlighting the current state of progress of the Hub
Briefing paper (March 2024)
Dear Colleagues,
We hope that this finds you well, and that you manage some down time over the Easter period. This is a short, end of 23/24 update from the Maternity and Neonatal Data Hub for Scotland.
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 (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).
A Programme Board (with representation from all five partners) meets quarterly to discuss progress. At the most recent meeting, earlier this week, we discussed how the MatNeo Data Hub might be supervised after the Best Start Implementation Programme finishes this summer, and how we can find out how people have used the outputs produced by the MatNeo Data Hub. Please let us know what you’ve found most useful, using the e-mails at the foot of this message.
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. Please take a look and let us know what you think.
The PHS-based Hub team are now part of the PHS cross-organisational Early Years and Young People Programme.
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 late April 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 have now tested this approach using dummy data. 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.
To enable such access, we have recently asked for (and mostly already obtained) restated information governance permissions from territorial boards’ Caldicott Guardians that reflect System C’s acquisition of Clevermed and the confirmed data transfer routes.
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). 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. In early April 2024 PHS will publish data on anti-seizure medicines prescribed in women during pregnancy and also in those under the age of 55 (who could potentially become pregnant). 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 will allow 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 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.
In parallel, 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.
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 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.
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.
Data download files are already available for each of the SPBAND measures. We have enhanced these download files (for the April data refresh), so they include more descriptive information about what is included in each column in the file. We have also made some small amendments to SPBAND wording to make definitions of measures easier to understand and updated links to material on other websites where the old location is no longer accessible.
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.
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