As well as managing the inter-dependencies among the projects described below, we have stabilised 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 April 2023.
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.
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 delivery (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. This allows us to know how many women are pregnant at a point in time and therefore eligible for antenatal screening and immunisations. Numbers of women booking for antenatal care, and average gestation at booking, are published monthly in the pregnancy section of the wider impacts dashboard.
Antenatal Booking Collection (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.
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, how data will be stored in PHS and planning how data should be presented.
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.
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.
As part of our COVID-19 response, Public Health Scotland (PHS) created a data dashboard showing wider impacts of COVID-19. This continues to be updated each month and includes data on many aspects of maternity care in Scotland. See the web resources page for a list of topics included.
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.
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.