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ASPIRE COVID-19 Work Package 5: Metadata for Clinical and Organisational Data, 2018-2021
Creator
Downe, S, University of Central Lancashire
Neal, S, University of Southampton
Stone, L, Swansea University
Matthews, Z, University of Southampton
Topalidou, A, University of Central Lancashire
Kingdon, C, University of Central Lancashire
Thomson, G, University of Central Lancashire
Study number / PID
856109 (UKDA)
10.5255/UKDA-SN-856109 (DOI)
Data access
Information not available
Series
Not available
Abstract
The submission is a collection of metadata for clinical and organisational data. Analysis was undertaken by the members of Work Package 5 (WP5), of the ASPIRE COVID-19 project, funded by the Economic and Social Research Council (ESRC), as part of UK Research and Innovation’s rapid response to COVID-19 [grant number ES/V004581/1]. Full details of the main study are available via Related Resources. This record contains metadata for monthly maternity clinical data from seven NHS trusts in England from January 2018 to September 2021, as well as metadata for organisational-level data.UK policy is for safe, personalised maternity care. However, during COVID-19 tests and visits have been reduced in some places, and some women with worrying symptoms are not going to hospital. Other places are trying new solutions, including remote access technologies. Some Trusts have reduced community maternity services, including home and birthcentre births; barred birth companions in early labour; and separated mothers, babies, and partners during labour, and in neonatal units. There are reports of women giving birth at home without professional help, possibly due to fear of infection, or of family separation. In contrast, the Netherlands has a policy of increased community maternity services during COVID-19. We want to find out how best to provide care for mothers, babies, and partners during and after a pandemic. We will look at what documents and national leads say about service organisation in the UK and the Netherlands, and at women's and parents experiences. We will also look in detail at what happened in 8 UK Trusts during the pandemic. We will find out how their services have been organised during COVID-19, what parents and staff think, and what the outcomes are, including infections. We will then share the findings with key stakeholders to agree a final organisational model that can be used to ensure safe, personalised routine and crisis maternity care, now, and in future....
Terminology used is generally based on DDI controlled vocabularies: Time Method, Analysis Unit, Sampling Procedure and Mode of Collection, available at CESSDA Vocabulary Service.
Methodology
Data collection period
31/05/2020 - 25/02/2022
Country
England
Time dimension
Not available
Analysis unit
Individual
Organization
Event/process
Group
Universe
Not available
Sampling procedure
Not available
Kind of data
Numeric
Text
Data collection mode
There does not appear to be an agreed list of clinical and organisational variables that capture safe and personalised outcomes in maternal and neonatal care, and the processes that underpin them. Even if these variables were defined, it is not clear that Trusts collect these variables routinely. Even if they are collected routinely, accessing routinely collected accurate NHS data is known to be problematic. The ASPIRE COVID-19 team therefore undertook an iterative process to develop a variables list for safe and personalised care that was likely to capture processes of care that may underpin safety and personalisation, and outcomes that measure these phenomenon; that were likely to be (or should be, based on policy requirements) collected at Trust level; and that could potentially be supplied with a minimum of extra resource by Trust teams, and without high data access costs to the ASPIRE COVID-19 project. The resulting Safe and Personal Domain Variable List was developed iteratively, based on the following steps: • Initial development of a list of variables usually reported in the literature, and based on the principles of Better Births Better Births report through the NHS Maternity Transformation Programme.• A subsequent iterative round of discussions amongst ASPIRE COVID-19 Co-Investigators, researchers, and Advisory/Steering Group members with direct and indirect experience, requesting views on how the original variable list maps to the working framework for data collection and what extra variables might be required, ideally, to populate the framework. • Addition of variables emerging from insights from the earlier documentary analyses and in-depth interviews in the ASPIRE COVID-19 Trusts.• Submission of a ‘long list’ of both the organisational and clinical variables to Trusts to assess which ones could be provided easily, with difficulty, or not at all.• Exclusion of variables that none of the ASPIRE COVID-19 Trusts reported as being recorded/obtainable with reasonable effort locally.Following these steps, the final variables lists were confirmed and Trusts provided data on key quantitative indicators from routinely collected data (see file: Clinical_data_metadata_variables_all_trusts; and file Organisational_data_metadata_variables_all_trusts).Other quantitative data was taken from the Family and Friends test, Safe Staffing data and UK Government data on COVID-19 incidence and hospital admissions.
Funding information
Grant number
ES/V004581/1
Access
Publisher
UK Data Service
Publication year
2022
Terms of data access
The Data Collection only consists of metadata and documentation as the data could not be archived due to legal, ethical or commercial constraints. For further information, please contact the contact person for this data collection.