Downloadable document (PDF) highlighting the current state of progress of the Hub
Briefing paper (July 2022)
(updated 07 July to reflect retiral of Dashboard Demonstrator)
We hope that this finds you well, and that you are looking forward to some time off over the summer. This is a short update on what the Maternity and Neonatal Data Hub for Scotland have been doing recently.
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”.
To respond effectively to the COVID-19 pandemic, work during 2020, 2021 and early 2022 differed from what we originally planned, allowing PHS to meet urgent demands for surveillance data on maternity, neonatal and paediatric care. However, the MatNeo Data Hub programme have now resumed all planned activities.
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 new Antenatal Booking Collection data return); terminations of pregnancy (numbers and average gestation), and deliveries (gestation, mode (including C-section), whether induced, Apgar scores <7, 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 (NHS Digital) and Wales, to UK-wide audits and with IT system suppliers.
A Programme Board (with representation from all five partners) continues to meet 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. These include data dashboards and a Topics Index showing where maternity and neonatal data is already available. 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 met for a sixth time in April 2022.
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 in to Public Health Scotland (PHS). We are continuing to consider with digital midwives, and others, how data quality (completeness and consistency) can be ensured when data is sourced from clinical systems. We are progressing commercial negotiations with Clevermed to agree a subscription-service contract to allow access to maternity and neonatal data that they hold on behalf of Scottish NHS boards, where boards ask them to do so.
3. Establish new all-Scotland maternity data returns (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.
The ABC data is being used by the COVID-19 in Pregnancy in Scotland (COPS) study to identify a dynamic cohort of pregnant women. COPS aims to find out how COVID-19 infection during pregnancy affects mothers and babies. Data from COPS on COVID-19 infection in pregnant women and neonates, and COVID-19 vaccination in pregnancy, has also been presented (most recently on 11 May) in some PHS COVID weekly reports. Post COVID we wish to maintain this dynamic pregnancy cohort and we are exploring how we can.
We are finalising an expanded version 2 of the Antenatal Booking Collection (ABC). We are also developing a Delivery and Baby (DeB) dataset, which will, in the initial version 1, be deployed alongside the existing SMR02 to gather additional data on deliveries and babies that is not included in SMR02. We will be testing both through one-off data transfers over the next six months.
We are also exploring how we can capture data on early pregnancy events (including miscarriage) from early pregnancy centres.
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. We are working with the National Neonatal Network to support their needs.
5. Data displays showing maternity and neonatal dashboard COREs
As part of a consultation in 2020 we developed a dashboard demonstrator, which provided links to existing data displays. This has now been retired. We are, however, continuing to maintain a “Topics Index”. This catalogues individual maternity and neonatal measures already available, including those on the wider impacts dashboard, Discovery, NMPA, NNAP and PHS websites. The Topics Index also includes a list of CORE maternity measures. 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 (email@example.com) and we will seek alternative ways of sharing the index with you.
We have been developing additional data displays for maternity CORE measures to add to post-COVID 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 agreed a proposal for open-access post-COVID dashboards that incorporates these ideas with our Programme Board. We are also considering with Programme Board partners how new displays we produce can be maintained, and reviewed regularly by relevant national organisations. In the meantime we have made some changes to the access-controlled Discovery dashboard, including using ABC data for monitoring gestation at booking.
Members of the programme team are continuing to work with a National Neonatal Network Data Group, to develop a companion neonatal dashboard CORE.
Our colleagues in the maternity analytical team in Public Health Scotland published the annual Births in Scotland publication at the end of November 2021. A new annual report on Antenatal Booking, based on Antenatal Booking Collection data, was published at the end of March 2022. This includes data on numbers of pregnancies booked, maternal smoking status and gestation at booking. The annual Termination of pregnancy publication was released on Tu 31 May 2022. Information is provided on a variety of characteristics including age, gestation, method of termination, NHS Board of residence and treatment, deprivation area, previous termination and Ground for termination.
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.
We hope you and yours stay safe and well.
Very best wishes,
Alastair (on behalf of the MatNeo Data Hub team)
You can also contact us via our generic email address for the Hub Programme: firstname.lastname@example.org