ASPIRE COVID-19 Work Package 5: Metadata for Clinical and Organisational Data, 2018-2021

Downe, S and Neal, S and Stone, L and Matthews, Z and Topalidou, A and Kingdon, C and Thomson, G (2022). ASPIRE COVID-19 Work Package 5: Metadata for Clinical and Organisational Data, 2018-2021. [Data Collection]. Colchester, Essex: UK Data Service. 10.5255/UKDA-SN-856109

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. This will include useful resources and links relating to innovative best practices that we find out about during the study.

Data description (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.

Data creators:

Creator Name	Affiliation	ORCID (as URL)
Downe S	University of Central Lancashire	https://orcid.org/ 0000-0003-2848-2550
Neal S	University of Southampton	https://orcid.org/ 000-0003-1812-7221
Stone L	Swansea University	https://orcid.org/ 0000-0001-6627-984X
Matthews Z	University of Southampton	https://orcid.org/ 0000-0003-1533-6618
Topalidou A	University of Central Lancashire	https://orcid.org/ 0000-0003-0280-6801
Kingdon C	University of Central Lancashire	https://orcid.org/ 0000-0002-5958-9257
Thomson G	University of Central Lancashire	https://orcid.org/ 000-0003-3392-8182

Sponsors:

ESRC

Grant reference:

ES/V004581/1

Topic classification:

Health

Keywords:

MIDWIVES, MATERNITY CARE, MATERNITY PATIENTS, HEALTH, WELL-BEING (HEALTH)

Project title:

ASPIRE-COVID-19: Achieving Safe and Personalised maternity care In Response to Epidemics

Grant holders:

Soo Downe, De Jonge Ank, Fenton Alan Charles, Ellison George, Matthews Zoe, Wright Alison, Neal Sarah, Kingdon Carol, Heazell Alexander, Topalidou Anastasia, Thomson Gill, Severns Alexandra

Project dates:

From	To
31 May 2020	25 February 2022

Date published:

14 Dec 2022 23:15

Last modified:

14 Dec 2022 23:16

Coverage and Methodology

Temporal coverage:

From	To
7 January 2018	30 September 2021

Collection period:

Date from:	Date to:
31 May 2020	25 February 2022

Geographical area:

England Seven NHS trusts in England from the North West, West Midlands, South East and London

Country:

England

Data collection method:

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.

Observation unit:

Individual, Organization, Event/Process, Group

Kind of data:

Numeric, Text

Type of data:

Qualitative and mixed methods data

Resource language:

English

Access and Administration

Data sourcing, processing and preparation:

Data preparation and analysis Preparation of in-depth data includes cleaning and checking of missing variables, and cross checking unlikely data series with Trusts. The use of different denominators over time, or between Trusts were reconciled. Imputation of missing data for Trust provided variables haven’t been used, as we evaluated missingness as a potential indication of a service under stress. Publicly available MSDS series were compared with the series provided by Trusts and differences were reconciled. Staffing variables, ambulance data and COVID infection rates were cleaned and checked. In some cases where numbers were small for particular indicators three month averages have been used. For indicators where numbers were very small we also considered looking at averages for periods pre and during the pandemic. Analysis of missingness has been carried out for MSDS data based on the number of months missing for each variable before and during COVID-19 and focussing on variables that are related to the domains of safe and personalised care. ETHICS The study received Health Research Authority (HRA) and Research Ethics Committee (REC) approval on 23rd October 2020 (IRAS285693). The application was fast-tracked for approval and assessed as under the scope of the COPI Notice. Individual Trusts made their own priority assessment in accordance with the RESTART Framework or RECOVERY Framework. For the clinical data data anonymisation and coding were performed by each Trust. Data sets were shared and stored in a .csv format. UCLan had in place a Secure Data Transfer Plan monitored by UCLan’s Data Management Officer and an active Data Management Plan. Anonymised data sets were transferred (from each Trust to UCLan) through the University’s OneDrive account only. For additional security files were encrypted before any transfer. Once the data set was received, it was stored in the University’s Secure Network and removed from the OneDrive account.

Rights owners:

Name	Affiliation	ORCID (as URL)
Downe S	University of Central Lancashire	https://orcid.org/ 0000-0003-2848-2550
Neal S	University of Southampton	https://orcid.org/ 000-0003-1812-7221

Contact:

Name	Email	Affiliation	ORCID (as URL)
Downe, S	sdowne@uclan.ac.uk	University of Central Lancashire	https://orcid.org/ 0000-0003-2848-2550
Neal, S	s.neal@soton.ac.uk	University of Southampton	https://orcid.org/ 000-0003-1812-7221

Notes on 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.

Publisher:

UK Data Service

Last modified:

14 Dec 2022 23:16