Why is this data required?
Over 700,000 women give birth each year in England, Scotland and Wales and the majority of women receive a safe and effective service. Monitoring the standard of care provided by maternity services is essential to informing efforts to give all women and their babies the best possible care. The National Maternity and Perinatal Audit (NMPA) has been commissioned by the Healthcare Quality Improvement Partnership (HQIP), on behalf of the English Government, the Welsh Government and the Health Department of the Scottish Government. It is being delivered by the Royal College of Obstetricians and Gynaecologists, in collaboration with the Royal College of Midwives, the Royal College of Paediatrics and Child Health and the London School of Hygiene and Tropical Medicine.
The NMPA will use existing data sources, including clinical data from local systems, to run a continuous audit of a number of key interventions and outcomes which will identify unexpected variation between service providers. In this way, bespoke data collection is avoided and the burden on clinical staff of data collection for the sole purpose of the audit is kept to a minimum.
Why is this data being requested in addition to the NHS Digital Maternity Services Data Set?
We recognise that there has been a national requirement for English NHS trusts to contribute to NHS Digital’s Maternity Services Data Set (MSDS) for women booking their antenatal care from April 2015.
The period covered by the first year of the NMPA largely pre-dates the introduction of the MSDS. More than three quarters of the mothers who gave birth between 1st April 2014 and 31st March 2016 will not be included in the MSDS as they would have booked before April 2015.
The NMPA hopes to use the MSDS as the primary source of data for the audit from the second year onwards, subject to sufficient data completeness and quality being achieved, and we are liaising closely with NHS Digital to this end. However, whilst MSDS submission rates have been steadily improving, the data set is not yet sufficiently complete to be used for national audit purposes.
To assist you with producing the NMPA extract, we have kept the variable names and codes consistent with the MSDS wherever possible. There are a small number of items requested which are not contained within the MSDS, and these are highlighted in the extract request.
We have also been liaising with the maternity systems suppliers and ensure that they are aware of the data request and its format. We have been encouraged by the positive response received so far and their willingness to help you to extract the data in an appropriate format. We are aware that there may be a cost implication in this, and have today written to all suppliers explaining that we expect any costs involved to be fair. Please let us know if you have any concerns.
What if a particular variable is not captured by my electronic maternity record system?
If a particular variable is not captured by your local system/s, please use the code specified in the data specification for ‘missing/unknown/not stated’. For most variables this is either ‘9’ or ‘99’. If for any reason it is not possible to use the specified code for missing data, please leave the column blank when you return your extract and contact us giving details of the missing variable/s.
There are over twenty system suppliers and they all have slightly different configurations. We believe these data points to be present in most, if not all, of the systems as almost all are in the specification for the Maternity Services Data Set, but you may not have collected this data in 2014. If you are unsure whether a variable is captured under a different name, you may wish to check with your IT Midwife, a colleague from the maternity department, or your system supplier.
What do I do if I switched system suppliers during this reporting period?
We recognise that suppliers change. If you switched suppliers during the time covered by the first NMPA reporting period (1st April 2014 to 31st March 2016) we should already have this information from our earlier survey. If you are able to send us separate extracts from the different systems, please do so. If you can no longer access patient-level legacy data, please contact us directly.
What should I do if my trust has different sites using different maternity record systems?
If your trust has more than one maternity record system in use across different sites, it is possible to send a separate data return for each site covering the births in that location. If all sites use the same system, please provide a single return covering all births within the trust if possible.
I’m not able to use FileZilla. How else can I get data to you?
FileZilla is software that enables secure file transfer and is free to download. Instructions are included in the attached File Transfer Instructions document. If you are not able to download FileZilla, please contact us and we will explain the alternative options.
Will all of the data be used? Will it all be published, and when?
Yes; we have conducted extensive checking prior to releasing the specification to ensure that each data point will be used in the analysis. Some of the data will not be published but will be used for risk adjustment. To a certain extent it is impossible for us to be completely certain what will be directly published, as we do not know the level of completeness of the data across the country yet. The first NMPA report will be launched in late 2017 and data will be published on a named unit basis. Units will have an opportunity to inspect their data prior to publication.
How will data quality be assessed?
The NMPA team will be undertaking careful data quality assessments on a trust by trust basis and will be liaising with trusts directly to resolve any data quality issues where these are identified. Our approach to these assessments is informed by our previous work in this area and draws on both methodological and clinical expertise. As with our previous publications, where we discover data quality problems for a particular variable within a unit, the unit will be excluded from audit measures that require this variable and results will not be published.
Is participation in the NMPA mandatory?
Yes; the audit is part of the National Clinical Audit and Patient Outcomes Programme and therefore falls under the NHS Standard Contract, which means that all NHS maternity providers are expected to participate. This wide participation will give a rich overview of maternity services and will allow meaningful comparisons to be made.
What if we are unable to send data in the format required?
We are likely to be able to work with what you can produce. Please contact us and we will explain the alternative options.
Why do you need personal identifiable data?
We have obtained Section 251 approval (previously circulated, and available on request) from the Health Research Authority’s Confidentiality Advisory Group, on behalf of the Secretary of State, allowing us to handle patient identifiable data without consent and link it to other relevant datasets.
Personal identifiable data is required to enable linkage at individual patient level. Personal identifiable data will only be handled by NMPA Data Managers. All other members of the team will use de-identified data linked to an NMPA ID.
Data from local electronic maternity record systems will be linked to Hospital Episode Statistics (HES), and Office for National Statistics (ONS) for English Trusts. This process will use the Data Linkage Service at NHS Digital. Patient identifiers will be securely transferred to NHS Digital for linkage purposes.
To gain additional information, the NMPA will also link data extracts at individual patient level to other databases, the details of which are available in the Terms and Conditions document (previously circulated, and available on request).
How do I know that personal data will be kept secure?
The RCOG will hold personal data on a secure server within the NHS N3 network. The server is operated by the RCOG, and is leased to the RCOG by RedCentric. RedCentric have provided NHS network services for many years and are contracted under an agreement that guarantees secure data processing. All organisations involved in data processing have an up-to-date NHS IG Toolkit assessment. Further details on data security are given in the RCOG System Level Security Policy Document for the RCOG Secure Server (copy available on request).
Do we need to inform all women who used our maternity service since 1 April 2014 about how their information will be used?
In our application for Section 251 Approval from the Health Research Authority’s Confidentiality Advisory Group, we advised that it would not be practicable for each unit to retrospectively approach all women who delivered in their hospital/s, as this would place a disproportionate burden on the care providers. Each unit would need to contact between 1,000 and 10,000 women, a proportion of whom would be difficult to trace due to changes of address. This was accepted by the Confidentiality Advisory Group and Section 251 approval was granted to process this data without informed consent. As you have seen we were instead asked to make ‘reasonable efforts’ to inform women of the processing of their data (including details of how to opt out), by providing a leaflet for trusts to display on their website. Individual leaflets can also printed out and displayed in appropriate locations around the trust.