Downloadable document (PDF) highlighting the current state of progress of the Hub
Briefing paper (March 2023)
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 22/23 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”.
As part of our COVID-19 response, Public Health Scotland (PHS) created a data dashboard showing wider impacts of COVID-19 at https://scotland.shinyapps.io/phs-covid-wider-impact/. This continues to be updated each month and includes data on many aspects of maternity care in Scotland including: breastfeeding; stillbirths, neonatal and infant deaths; antenatal bookings (numbers and average gestation; from the Antenatal Booking Collection); terminations of pregnancy (numbers and average gestation), and births (gestation, type (including C-section), whether induced, Apgar scores <7, perineal tears, and extremely preterm deliveries at sites with a Neonatal Intensive Care Unit; NICU).
Here’s a quick progress report on each of our 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 a 4-nation maternal data group we established), to UK-wide audits and with IT system suppliers.
A Programme Board (with representation from all five partners) meets quarterly to discuss progress with new data acquisition and display.
With the assistance of the Scottish Perinatal Network we have established a web presence at https://www.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 April 2023.
We are working with Healthcare Improvement Scotland to provide data on caesarean section births by Robson Category, to support quality improvement.
We continue to work with National Services Scotland Digital and Security (DaS) colleagues, with colleagues in NHS Boards, and with Clevermed – who provide the BadgerNet systems – to bring nationally-consistent maternity and neonatal data from clinical systems into Public Health Scotland (PHS). We are continuing to consider how data quality (completeness and consistency) can be ensured when data is sourced from clinical systems.
We are still in commercial negotiations with Clevermed to conclude a data services agreement to allow access to maternity and neonatal data that they hold on behalf of Scottish NHS boards, where boards ask them to do so. We have confirmed with Clevermed that although Clevermed has been acquired by System C Healthcare, Clevermed will continue to be a legal entity with its own Information Commissioner’s Office registration. We do not therefore think substantial changes will be required to the agreement we are negotiating.
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); data from this continues to be published monthly on the wider impacts dashboard mentioned above. Antenatal booking collection data can also be used to count how many women should have been offered antenatal screening and immunisations.
ABC data was used by the COVID-19 in Pregnancy in Scotland (COPS) study to identify a dynamic cohort of pregnant women. COPS investigated how COVID-19 infection during pregnancy affects mothers and babies. They also measured COVID-19 vaccination uptake in pregnancy and assessed the effect of vaccination on outcomes for mothers and babies. The COPS team have published several key research papers. Post-COVID, PHS is building on methods developed for the COPS study to maintain a dynamic pregnancy cohort (the Scottish Linked Pregnancy and Baby Dataset, SLiPBD).
PHS have finalised an expanded version 2 of the Antenatal Booking Collection (ABC). We are also developing a Mother, Birth and Baby (MoBBa) dataset. This was previously called the Delivery and Baby (DeB) dataset and will, in the initial version 1, be deployed alongside the existing SMR02 to gather additional data on mothers, births and babies that is not included in SMR02. We will be testing both ABC2 and MoBBa through one-off data transfers in spring/summer of 2023.
We are also exploring how we can capture data on early pregnancy events (including miscarriage) from early pregnancy centres. We are continuing to build a picture of how services are delivered and finalising a dataset.
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 Boards) how we can have this dataset routinely available, how data will be stored in PHS and planning how data should be presented.
5 Data displays showing maternity and neonatal dashboard COREs
We previously developed CORE maternity measures for incorporation into maternity dashboards, and many of these are available already on the wider impacts dashboard.
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 wider impacts 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 (phs.matneodatahub@phs.scot) and we will share the latest index with you.
We have continued to develop additional data displays for maternity CORE measures to add to post-COVID, publically-accessible dashboards. These include time series charts to allow comparison (for a particular measure) across Health Board areas, and a multi-indicator board comparison to display multiple indicators for health board areas. We have demonstrated these to key groups and received great feedback which we have used to improve the displays. We will launch a ‘beta version’ for initial use and further comment very soon.
Members of the programme team are continuing to work with a National Neonatal Network Data Group, to develop a companion neonatal dashboard CORE and neonatal network metrics. We recently circulated a proposal for neonatal network metrics to the Data Group and received useful feedback on definitions, suggested frequency of reporting and whether data is required at unit and/or all-Scotland-network level.
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.
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 for the festive season,
Alastair (on behalf of the MatNeo Data Hub team)
You can also contact us via our generic email address: phs.matneodatahub@phs.scot