Understanding the health needs of mothers involved in family court cases
University College London (UCL) · Academic
In term In term in the September 2026 edition: the latest version runs to 20 December 2026.
- Reference
- DARS-NIC-196263-J9Q7Z
- Current version
- v1.4
- Term of current version
- 21 December 2023 to 20 December 2026
- Start date
- 1 December 2020
- Data controller
- Sole Data Controller
- Commercial purposes
- No
- Sublicensing
- No
- Files released to date
- 1
Why the data was released
Objective for processing
University College London (UCL) requires access to NHS England data for the purpose of the following research project: ‘Understanding the health needs of mothers involved in family court cases’.
Women who were aged between 15 and 50 years when their first live birth occurred recorded in the Hospital Episodes Database between 01/04/1997 and 01/04/2017 will make up the cohort. It is estimated that there will be a maximum of 12 million women in this cohort. This cohort of women will be linked with programme information from the Children and Family Court Advisory and Support Service (Cafcass) which relates to women involved in care proceedings between 01/04/2007 and 31/03/2022, and which includes around 113,000 mothers. UCL will be receiving up-to-date information about care proceedings for the same cohort of women for the years 2022 and 2023.
The women identified from HES records whose records cannot be linked with Cafcass data will act as a control cohort for analysis. This allows UCL to compare women linked in the Cafcass data to the general population of women giving birth as 97% of women in England who give birth in NHS hospitals.
The Cafcass extract used for this study will be minimised by the UCL research team to only contain information on women aged 15-50 years who were party to section 31 applications. Section 31 of the Children Act 1989 pertains to care proceedings where local authorities apply to have a child removed from parental supervision due to serious concerns for the child safety and wellbeing. The extract will contain demographic information on the mothers (date of birth, local authority of residence), information on the children subject to the case (number of children, month and year of birth, sex), and information on the care proceedings (hearing dates, final legal output).
The Cafcass data is held by the Children and Family Court Advisory and Support Service, and available for researchers upon request. (Research must be approved by the Cafcass Research Advisory Committee. The committee checks if the proposed research is feasible, as well as beneficial for Cafcass and for children and families using the service. The research will only be approved if it is relevant to Cafcass’ statutory remit and strategic aims. In this case, the committee has approved the UCL project as being done in accordance with Criminal Justice and Court Services Act 2000 (CJCSA) section 13 and falling within its strategic aims).
The aim of this use of the data is to assess the feasibility of using linked health and family court administrative data sets to facilitate research to explore the underlying issues such as long-term health and mental problems. Further, it aims to inform policy about associations between justice system risk factors, such as regional variation in returns to court and health outcomes such as time to next pregnancy, mental health exacerbations during court proceedings.
The study aims to generate evidence about the health needs of mothers involved in public law care proceedings in England. There is clear evidence that mothers, whose children enter public care or are adopted, often have complex health needs, such as drug and/or alcohol misuse, exposure to violence, mental health problems as well as chronic physical conditions.
Key questions are:
Question 1: Are there health characteristics of mothers that are associated with a high likelihood of care proceedings?
Question 2: Among mothers involved with care proceedings, what characteristics are associated with time to subsequent pregnancy, adversity related admissions and adverse outcomes related to court?
UCL has defined adversity related admissions are admissions related to alcohol- and/or illicit drug use, self-harm, violence and severe mental health. As adverse outcomes, UCL will assess time to next pregnancy (and return to court for further children in the Cafcass data), emergency hospital admissions and deaths.
Key policy questions will be addressed by this study:
1) Is there an unmet burden of health need that could be reduced by interventions in courts, social services or health services;
2) could improved input by healthcare services reduce the chance of being the subject of care proceedings and improve health and welfare outcomes for mother and child.
UCL will attempt to generate research evidence to answer these questions by assessing which health characteristics of mothers are associated with a high likelihood of being involved in care proceedings, and determining what characteristics are associated with time to subsequent pregnancy, adversity related admissions and adverse outcomes related to court.
UCL will explore risk factors known at live birth (such as maternal age, parity, (history of) mental health related admissions, underlying long-term conditions, adversity-related injury admissions) and their association with timing of care proceedings. UCL require whole HES records to assess how and when women use health services, determine whether there is proactive management through outpatients, assess whether health crisis recorded as Accident and Emergency (A&E) attendances or unplanned admissions are related to hearing dates, and asses underlying conditions using women’s medical history as recorded in Hospital Episode Statistics (HES) (e.g. long term conditions or adversity-related admissions as recorded in ICD-10 or OPCS codes (classification of Interventions and Procedures)). UCL request HES data from 1997 in order to identify the birth episodes for children involved in court cases from 2007 onwards, as well as to identify any long-term conditions in the mothers.
The following NHS England data will be accessed:
• Hospital Episode Statistics Outpatients (HES OP)
• Hospital Episode Statistics Admitted Patient Care (HES APC)
• Hospital Episode Statistics Accident & Emergency (HEA A&E)
• HES: Civil Registration (Deaths) bridge
• Civil Registrations of Death - Secondary Care Cut
Access to these datasets is necessary to asses risk factors and outcomes in mothers subject to care proceedings.
The Cafcass extract used for this study will be minimised by the UCL research team to only contain information on women aged 15-50 years who were party to section 31 applications (care proceedings where local authorities apply to have a child removed from parental supervision due to serious concerns for the child safety and wellbeing). The extract will contain demographic information on the mothers (date of birth, local authority of residence), information on the children subject to the case (number of children, month and year of birth, sex), and information on the care proceedings (hearing dates, final legal output).
The Cafcass data is held by the Children and Family Court Advisory and Support Service, and available for researchers upon request. (Research must be approved by the Cafcass Research Advisory Committee. The committee checks if the proposed research is feasible, as well as beneficial for Cafcass and for children and families using the service. The research will only be approved if it is relevant to Cafcass' statutory remit and strategic aims. In this case, the committee has approved the UCL project as being done in accordance with CJCSA section 13 and falling within its strategic aims).
The level of the data will be:
• Pseudonymised
Identifiable data was processed for the previous iteration of this DSA (v0.11), this was necessary to enable linkage of the data with data from Cafcass. There will no new data linkage taking place as a part of this DSA, therefore no further processing or flow of identifiable data will take place under this DSA.
The data will be minimised as follows.
• Limited to a study cohort of women who had a live birth while between the ages of 15 and 50 years old between the period from 1 April 1997 to 1 April 2017
• Limited to data between 01/04/1997 and 31/03/2023 - data will be obtained by UCL under a separate DSA (ref: DARS- NIC-393510-D6H1D). UCL will access HES APC, A&E, HES OP data and Civil Registration (deaths) records for the study cohort described above.
UCL is the research sponsor and the controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.
The lawful basis for processing personal data under the UK GDPR is:
Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;
The lawful basis for processing special category data under the UK GDPR is:
Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.
It is in the public interest because the research influences Department of Health policy makers, service providers, healthcare professionals and the general public. This directly benefits the health of mothers involved in care proceedings and the healthcare provided to mothers at risk of care proceedings in the here and now and this is key to reducing future burden on the NHS and social care services.
The funding is provided by the Nuffield Foundation. The funding is specifically for the project described.
The funder will have no ability to suppress or otherwise limit the publication of findings.
Amazon Web Services (AWS) is a processor acting under the instructions of UCL. AWS’ role is limited to secure back-up of data stored in UCL’s Data Safe Haven.
UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data.
Data will be accessed by PhD students affiliated with UCL. Any student working with the Data held under this DSA must have completed relevant data protection and confidentiality training and are subject to UCL’s policies on data protection and confidentiality. Any students accessing the Data will do so under the supervision of a substantive employee of UCL. UCL would be responsible and liable for any work carried out by students. These students would only work on the Data for the purposes described in this DSA.
Previous public and patient engagement work for this data linkage project has helped to identify further stakeholders to engage with this work. UCL will continue to undertake public and patient engagement work to support interpretation of findings and to discuss methods of sharing study findings to ensure findings are accessible to both policy, practitioners and the study population. The group strongly supported the collection of the data for the purposes described above.
Processing activities
As data linkage has been completed, no further data will flow to NHS England under this DSA. Previous data flows are described below for reference.
Cafcass supplied NHS England with a list of identifier variables for women aged 15-50 years involved in section 31 care proceedings, including name (first and surname) date of birth, local authority of residence during care proceeding and postcode histories, alongside a study specific pseudo-identifier number (pseudo-study ID) for mothers involved in care proceedings in England that started between 1 April 2007 and 31 March 2022. Only identifiers for women aged 15 to 50 years involved in section 31 proceedings were transferred. No other Cafcass data will flow. The flow of identifying data from Cafcass to NHS England is Practice Direction 12G which enables Cafcass to lawfully share information about family court proceedings for the purposes of an approved research project.
These identifiers were linked to records held in the Master Patient Service (MPS). The identifiable information disclosed by Cafcass was used by NHS England to facilitate linkage with the MPS data in order to identify patients within the HES data.
A linked file was created, with the pseudo-study ID provided by Cafcass and the matching Token Person ID as recorded in MPS. The national data opt-out was then applied to this linked file and anyone from the Cafcass cohort who has opted out of having their data shared for research or planning purposes was removed from the linked file.
NHS England disclosed a file of pseudonymised Token Person IDs for women within the Cafcass dataset to UCL to enable linkage with this existing HES-Civil Registrations extract for the purpose of this study. The NHS England file did not contain the NHS Number or the postcode.
- NHS England transferred to UCL a list of pseudonymised study IDs for women who linked and encrypted Token Person IDs for women who link and women who do not link.
There will be no requirement or attempt to re-identify individuals.
The data will not be transferred to any other location.
The data will be stored in the UCL Data Safe Haven (DSH).
The UCL DSH uses Dual Factor Authentication to access and handle data transferred into the DSH service. This ensures that only the named applicants will have access to the data from DSH. Removing data from the Data Safe Haven is only allowed for the Principal Investigator. The DSH operates as a walled space and researchers are not able to connect to the internet or export data from it.
Amazon Web Services provides cloud hosting services to UCL and will store the data as contracted by UCL.
UCL uses offsite data centre services provided by VIRTUS data centre.
The data will be accessed by authorised personnel via remote access. The data will remain on the UCL Data Safe Haven at all times.
The data will not leave England at any time.
Access is restricted to substantive employees of UCL or PhD students who have authorisation from the principal investigator.
UCL will not link the Cafcass cohort linked to HES and Civil Registration data disseminated under the separate DSA (ref: DARS-NIC-393510-D6H1D) to any of the other datasets held under that separate DSA.
All personnel accessing the data have been appropriately trained in data protection and confidentiality.
The data linkage has been completed under the original Agreement and no further data linkage will take place. The data linkage details are retained below for information purposes.
The datasets that were linked are:
1) Hospital Episode Statistics (HES APC, A&E and OPD) and death registration data which contains details of all hospital contacts and deaths in NHS hospitals in England collected from 1 April 1997 to 31 March 2023 (data UCL already hold under NIC-393510-D6H1D). Women aged between 15 and 50 years, with at least one live birth recorded in the Hospital Episodes Database between 01/04/1997 and 01/04/2017 were extracted to make up the cohort to be liked with the Cafcass data.
2) The Children and Family Court Advisory and Support Service database (Cafcass) contains information on family care proceedings, including demographic information on persons involved in court applications (adults and children), hearing and application dates, and proceeding outcomes. Data is available from Cafcass from 2007 onwards.
The study cohort includes all women for whom a section 31 application has been made (by an English local authority) concerning their child(ren) between April 2007 and March 2022. Though most section 31 applications result in a section 31 order being made, a considerable number result in children being placed with extended family under private law orders (such as a Special Guardianship Order) and a small number of applications are dismissed or are subject to an Order of No Order. Each of these outcomes are equally as important, particularly when considering the heterogeneity of this study population with respect to identifying risk factors for returning to court for subsequent s31 court proceedings.
To mitigate the risk of re-identification, identifiers were used by the trusted third party (NHS England) to carry out the link between the two data sets (Cafcass and HES, via MPS), the final analysis files only contains pseudonymised non-sensitive variables.
There will be no requirement and no attempt to reidentify individuals when using the data.
Researchers from UCL will analyse the data for the purposes described below.
Analysis of the linked dataset will involve the following steps:
Question 1: Are there health characteristics of mothers that are associated with a high likelihood of care proceedings?
As a first step, UCL will determine the proportion of mothers in the linked Cafcass-HES cohort who have prior indicators of vulnerability (history admissions for mental health problems, injuries related to self-harm, drug or alcohol misuse or violence, exposure to violence, chronic conditions, or young age (<20 years) at (previous) live birth).
UCL will determine the frequency of hospital contacts (planned and unplanned) for this group of women and describe how this relates to timing of pregnancy and birth, as well as the care proceeding. The findings will inform policy makers about the potential for health services to offer more holistic care for this population of women before they are involved in care proceedings (e.g. are indicators of vulnerability recorded before pregnancy?), and whether proactive care could be warranted during care proceedings (e.g. if women are at risk of exacerbation's such as self-harm admissions during proceedings).
From previous research as part of the Children Policy Research Unit, UCL will have information on the sub-cohort of mothers with history of risk factors for child maltreatment (e.g. mental health, alcohol/illicit drug, or violence related hospital admissions) as compared to the whole population, for instance the rates and ages at first live birth.
The main analyses for question 1 will determine whether there are specific factors in the healthcare records before and during birth and immediately after that could identify groups of mothers who might benefit from targeted early intervention. By having a comparator group of mothers not involved in court proceedings, UCL will quantify the relative importance of these risk factors, and identify potential points of intervention for healthcare services (e.g. at antenatal care, or during hospitalisation prior to pregnancy or birth).
In secondary analyses, UCL will determine whether associations between healthcare risk factors and having a record of care proceedings are affected by indicators of unmet healthcare need such as emergency admissions to hospital or serious healthcare conditions in the mother. UCL hypothesise that contact with healthcare services provides opportunities for interventions, such as the provision of contraception to delay future pregnancies, or treatment for mental health problems, which might improve capacity to parent.
UCL will use multiple regression techniques to study these associations. This will provide UCL with an estimate of the likelihood of care proceedings in each risk group, adjusted for risk factors such as area-based deprivation levels and underlying health needs.
Question 2: Among mothers involved with care proceedings, what characteristics are associated with time to subsequent pregnancy, adversity related admissions and adverse outcomes related to court?
Two key outcomes for question 2 are the timing of subsequent pregnancies after an initial set of care proceedings and involvement in recurrent care proceedings, given a further pregnancy. From previous work, UCL would expect that approximately 25% of mothers will have recurrent care proceedings, but it is not currently known how many women have subsequent pregnancies.
UCL will also analyse a range of secondary outcomes obtained from the health data for mothers, including rates of hospital admission and death. Assessing these outcomes will allow UCL to examine how indicators of proceedings. Findings from these analyses will inform inferences about whether input from healthcare might help prevent further care proceedings.
UCL will use multivariable survival analyses to determine time to next pregnancy and recurrent care proceedings, and whether this is related to underlying risk factors evident before or during the index care proceedings. UCL will also explore whether any associations are mediated through healthcare events or needs that are indicated by HES records after the first set of care proceedings. For example, UCL will determine whether risk factors such as maternal age at first birth, presence of other children, underlying chronic health conditions, a history of injury due to self-harm, drug or alcohol misuse or violence, are associated with the timing of subsequent pregnancy and recurrent care proceedings and whether these risk factors could be used to identify mothers most likely to experience further care proceedings.
The analyses will quantify the relative contribution of health events and healthcare needs for mother and/or child to the likelihood of recurrent care proceedings. If UCL find strong associations, UCL could hypothesise that health interventions postpone the timing of subsequent pregnancy and reduce the likelihood of recurrent care proceedings. The findings will provide evidence on the potential for healthcare interventions to reduce the risk of subsequent care proceedings.
When describing and analysing differences in secondary care service use among the study and control cohorts, UCL will use proxy measures for potentially unmet healthcare need such as having recurrent A&E attendances, readmissions to hospital, and emergency admissions. In addition, UCL will look at reasons for and length of emergency admissions; for example, 0-1 night stays, ambulatory care sensitive conditions as well as admissions related to mental health, substance misuse and exposure to violence have been used previously to identify potentially avoidable admissions to hospital.
However, UCL also recognise the limitations of the data. As UCL attempt to answer these policy questions, UCL expect to develop hypotheses that could be addressed in further research focussing on evaluating interventions to respond to and reduce unmet healthcare need in the study population.
UCL have formed a Project Advisory Group that includes practitioners across health, social care and family justice to support the interpretation of study findings. In addition, similar work by researchers in Wales using Cafcass Cymru linked to NWIS (NHS Wales Informatics Service) data within the SAIL data bank will offer opportunities to compare findings across England and Wales to strengthen UCLs interpretation of study findings.
No new data will flow to UCL (University College London) for the purpose of this study. The data for the control cohort has already flowed to UCL under DARS NIC-393510, therefore UCL are not requesting any additional data on hospitalisations, A&E attendances, outpatient appointments, or civil registrations to flow between NHS England and UCL under this agreement.
UCL requires data on the whole-population (i.e. all women with a live birth episode in HES between 15 and 50 years old in England) to accurately quantify sociodemographic and health differences between mothers in England who are involved in s31 applications (i.e. who link to Cafcass) and mothers who are not. UCL also expect these differences to vary by region and by local authority as children’s social care practice and local population characteristics vary considerably across England, as well as by time. Understanding differences by area and time are crucial to ensuring any study finding are generalisable and relevant to both national and local policy makers and service planners.
For some analyses UCL must use statistical matching methods to match mothers in HES who link (to Cafcass) to controls (mothers in HES who don’t link to Cafcass) based on a number of variables in HES (e.g. age at first HES birth episode, age and number of children at baseline, ethnicity, local authority of residence, comorbidities recorded in HES etc). The variables used in matching, as well as the timing for baseline measurements, will vary by analyses dependent on the study outcome. In order to achieve balance across matching variables, UCL require a large pool of controls representative across all local authorities in England. In addition, for particularly rare study outcomes (e.g. such as maternal mortality and adversity-related admissions) UCL require a sufficient number of controls to robustly model outcomes.
The proposed control group would not result in any additional data flowing between NHS England and UCL, and a lack of a whole-population control group would impact feasibility of the whole study and UCLs ability to meet the objectives of this study, to ensure that analyses are robust, and to inform policy and practice at the local as well as national level.
Expected output
The expected outputs of the processing will be:
• A report of findings to the Nuffield Foundation at the end of the project with an overview of the research findings.
• Submissions to peer reviewed journals such as the International Journal of Population Data Science, Lancet Public Health or Archives of Disease in Childhood in 2024 and 2025.
• Presentations to the Ministry of Justice Areas of Research Interest (ARI) academic seminar series, Cafcass analytical team, Nuffield Foundation
• Presentations at appropriate conferences such as the, International Population Data Linkage Conference, International Society for the Prevention of Child Abuse and Neglect, Royal College of Paediatrics and Child Health annual conference, and Informatics for Health conference
The outputs will not contain NHS England data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.
The outputs will be communicated to relevant recipients through the following dissemination channels:
• Journals
• Public reports
• Press/media engagement
Expected measurable benefits
The research will inform Department of Health and Social Care and Ministry of Justice policy makers, service providers and practitioners about patient and service factors associated with the health needs of mothers and children involved in care proceedings in family court. UCL will work with the funder, the Nuffield Foundation to organise a symposium inviting key policy makers and scientists to showcase the findings.
UCL has also formed a project advisory group that includes six leading practitioners from across health, family justice and child safeguarding. Part of UCL’s planned discussions with this group will include identifying ways to improve communication about this project and to identify a wide range of organisations including within health, children’s social care, family justice and the voluntary sector with which to share study findings. This group includes a PAUSE practice lead and the programme manager for SHRINE (a human rights -based service in South London delivering sexual and reproductive healthcare to marginalised populations including people with serious mental illness or substance misuse).
The use of the data could:
• help the system to better understand the health and care needs of populations.
• advance understanding of regional and national trends in health and social care needs.
• support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work).
The research project in this application informs policy and practice. All analyses undertaken as part of this project aim to provide evidence to inform health care professionals, service providers, policy makers and service users about the health of mothers in the family court system and how services currently meet their needs.
Results will provide evidence of how healthcare need and use of services differs between women who become subject to care proceedings and those who do not. This will provide evidence that can guide the design of potential interventions to reduce care proceedings that Cafcass could test and implement.
This study will examine whether indicators for maternal adversity recorded in healthcare such as a history of admissions for mental health problems, drug/alcohol abuse or exposure to violence can identify groups of women at a live birth event who could benefit from proactive or preventive healthcare input that might reduce risk of involvement in (recurrent) care proceedings and improve health outcomes for both mothers and children.
This information will help family courts as it can identify health needs that health services are aware of at first contact with courts. Improved communication between services could direct potential interventions at this point. Additionally, results will evaluate the healthcare trajectories of women involved in (recurrent) care proceedings. This will provide evidence to assess whether healthcare services can identify (and potentially address) health needs in women at live birth before they go to court.
Evidence is lacking about the extent to which health needs are addressed by services before, during and after court involvement.
The sparse evidence currently available on families involved in recurrent care proceedings suggests this group is particularly vulnerable. Understanding when and how mothers use healthcare, what their health trajectories before care proceedings look like compared to other women with a live birth, and what their healthcare needs are before, during and after involvement in care proceedings will inform interventions aimed at safeguarding vulnerable families (defined as families involved in section 31 care proceedings for this study).
The hypothesis is that a longer time to next pregnancy following a first care proceeding is associated with a reduced risk of recurrent care proceedings, but this association may vary by area, final legal order of index care proceeding and individual risk factors such as presence of long-term conditions or mental health needs in the mother.
This study will also test the feasibility and success of linkage between health and family court data, while evaluating an important policy question about the association between health service use and recurrent care proceedings, taking into account risk factors.
It is hoped that through publication of findings in appropriate media, the findings of this research will add to the body of evidence that is considered by the bodies, organisations and individual care practitioners charged with making policy decisions for or within the NHS or treatment decisions in relation to specific patients.
UCL will share results with patients who are part of a mental health service user group based at King’s College London and PAUSE, a charity working with women who have experienced, or are at risk of, repeat removals of children from their care. https://www.pause.org.uk/about-us/
Benefits reported so far
The data linkage was only recently completed, benefits are expected to be yielded from 2024 onwards.
Datasets on the current version
Legal basis for provision: Health and Social Care Act 2012 – s261(2)(a)
| Dataset | Type of data | Sensitivity | Frequency | Confidential data |
|---|---|---|---|---|
| Civil Registrations of Death - Secondary Care Cut | Anonymised - ICO Code Compliant | Sensitive | One-Off | Statutory exemption to flow confidential data without consent |
| HES:Civil Registration (Deaths) bridge | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Statutory exemption to flow confidential data without consent |
| Hospital Episode Statistics Accident and Emergency (HES A and E) | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Statutory exemption to flow confidential data without consent |
| Hospital Episode Statistics Admitted Patient Care (HES APC) | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Statutory exemption to flow confidential data without consent |
| Hospital Episode Statistics Outpatients (HES OP) | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Statutory exemption to flow confidential data without consent |
| MRIS - Bespoke | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Statutory exemption to flow confidential data without consent |
| MRIS - List Cleaning Report | Anonymised - ICO Code Compliant | Non-Sensitive | One-Off | Statutory exemption to flow confidential data without consent |
Files released
Files released counts only files released externally by DARS. Access granted in NHS England's own systems, such as its Secure Data Environment, is not included.
Patient opt-outs were not applied to the one file released under this agreement. About opt-outs
No files recorded as released under the current version. 1 was released under earlier versions, shown in the version history.
Version history
The register lists each renewal of this agreement as a separate row. This site has 2 versions.
DARS-NIC-196263-J9Q7Z-v1.4 21 December 2023 to 20 December 2026
- Title
- Understanding the health needs of mothers involved in family court cases
- Commercial
- No
- Sublicensing
- No
- Datasets
- 7
- Files released
- 0
Datasets: Civil Registrations of Death - Secondary Care Cut; HES:Civil Registration (Deaths) bridge; Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Outpatients (HES OP); MRIS - Bespoke; MRIS - List Cleaning Report
What changed from DARS-NIC-196263-J9Q7Z-v0.11
Text removed is struck through; text added is underlined. Unchanged paragraphs are summarised rather than repeated.
| Field | Was | Became |
|---|---|---|
| Start date | 2023-12-21 | |
| End date | 2026-12-20 | |
| Civil Registrations of Death - Secondary Care Cut: legal basis | Health and Social Care Act 2012 – s261(2)(a) | |
| HES:Civil Registration (Deaths) bridge: legal basis | Health and Social Care Act 2012 – s261(2)(a) | |
| Hospital Episode Statistics Accident and Emergency (HES A and E): legal basis | Health and Social Care Act 2012 – s261(2)(a) | |
| Hospital Episode Statistics Admitted Patient Care (HES APC): legal basis | Health and Social Care Act 2012 – s261(2)(a) | |
| Hospital Episode Statistics Outpatients (HES OP): legal basis | Health and Social Care Act 2012 – s261(2)(a) | |
| MRIS - Bespoke: legal basis | Health and Social Care Act 2012 – s261(2)(a) | |
| MRIS - List Cleaning Report: legal basis | Health and Social Care Act 2012 – s261(2)(a) |
Objective for processing
University College London (UCL) are proposing to link an existing cohort of mothers and babies (held by the research team under a separate Data Sharing Agreement (DSA) with UCL; NIC-393510-D6H1D) with programme information from the Children and Family Court Advisory and Support Service (Cafcass). Women aged between 15 and 50 years, with at least one live birth recorded in the Hospital Episodes Database between 01/04/1997 and 31/03/2017 will make up the cohort. It is estimated that there will be a maximum of 12 million women in this cohort. This cohort of women will be linked to Cafcass data on women involved in care proceedings between 01/04/2007 and 31/03/2019, which includes 113,191 mothers. Those women who are not linked to Cafcass data will act as a control cohort for analysis. This will allow UCL to compare women linked in the Cafcass data to the general population of women giving birth as 97% of women in England who give birth in NHS hospitals.
University College London (UCL) requires access to NHS England data for the purpose of the following research project: ‘Understanding the health needs of mothers involved in family court cases’.
The Cafcass extract used for this study will be minimised by the UCL research team to only contain information on women aged 15-50 years who were party to section 31 applications (care proceedings where local authorities apply to have a child removed from parental supervision due to serious concerns for the child safety and wellbeing). The extract will contain demographic information on the mothers (date of birth, local authority of residence), information on the children subject to the case (number of children, month and year of birth, sex), and information on the care proceedings (hearing dates, final legal output).
Women who were aged between 15 and 50 years when their first live birth occurred recorded in the Hospital Episodes Database between 01/04/1997 and 01/04/2017 will make up the cohort. It is estimated that there will be a maximum of 12 million women in this cohort. This cohort of women will be linked with programme information from the Children and Family Court Advisory and Support Service (Cafcass) which relates to women involved in care proceedings between 01/04/2007 and 31/03/2022, and which includes around 113,000 mothers. UCL will be receiving up-to-date information about care proceedings for the same cohort of women for the years 2022 and 2023.
The Cafcass data is held by the Children and Family Court Advisory and Support Service, and available for researchers upon request. (Research must be approved by the Cafcass Research Advisory Committee. The committee checks if the proposed research is feasible, as well as beneficial for Cafcass and for children and families using the service. The research will only be approved if it is relevant to Cafcass’ statutory remit and strategic aims. In this case, the committee has approved the UCL project as being done in accordance with CJCSA section 13 and falling within its strategic aims).
The women identified from HES records whose records cannot be linked with Cafcass data will act as a control cohort for analysis. This allows UCL to compare women linked in the Cafcass data to the general population of women giving birth as 97% of women in England who give birth in NHS hospitals.
The data under NIC-393510-D6H1D is disseminated for a programme of research within the healthcare provision theme of the Policy Research Unit for Children, Young People and Families (CPRU), within University College London (UCL) which is funded by the Department of Health and Social Care (DHSC). The extract of data from NIC-393510-D6H1D for the purpose of this agreement NIC-196253 will only contain HES APC, A&E, Outpatient data and Civil Registration data on women who had a record of a live birth between the ages of 15 and 50 years old between 1 April 1997 and 31 March 2017.
The Cafcass extract used for this study will be minimised by the UCL research team to only contain information on women aged 15-50 years who were party to section 31 applications. Section 31 of the Children Act 1989 pertains to care proceedings where local authorities apply to have a child removed from parental supervision due to serious concerns for the child safety and wellbeing. The extract will contain demographic information on the mothers (date of birth, local authority of residence), information on the children subject to the case (number of children, month and year of birth, sex), and information on the care proceedings (hearing dates, final legal output).
This request aims to assess the feasibility of using linked health and family court administrative data sets to facilitate research to explore the underlying issues such as long-term health and mental problems. Further, it aims to inform policy about associations between justice system risk factors, such as regional variation in returns to court and health outcomes such as time to next pregnancy, mental health exacerbations during court proceedings.
The Cafcass data is held by the Children and Family Court Advisory and Support Service, and available for researchers upon request. (Research must be approved by the Cafcass Research Advisory Committee. The committee checks if the proposed research is feasible, as well as beneficial for Cafcass and for children and families using the service. The research will only be approved if it is relevant to Cafcass’ statutory remit and strategic aims. In this case, the committee has approved the UCL project as being done in accordance with Criminal Justice and Court Services Act 2000 (CJCSA) section 13 and falling within its strategic aims).
The aim of this use of the data is to assess the feasibility of using linked health and family court administrative data sets to facilitate research to explore the underlying issues such as long-term health and mental problems. Further, it aims to inform policy about associations between justice system risk factors, such as regional variation in returns to court and health outcomes such as time to next pregnancy, mental health exacerbations during court proceedings.
[3 paragraphs unchanged]
Question 2: Among mothers involved with care proceedings, what characteristics are associated with time to subsequent pregnancy, adversity related admissions and adverse outcomes related to
court ?
court?
[5 paragraphs unchanged]
UCL will explore risk factors known at live birth (such as maternal
[67 words unchanged]
using women’s medical history as recorded in Hospital Episode Statistics (HES) (e.g.
long-term
long term
conditions or adversity-related admissions as recorded in ICD-10 or OPCS codes (classification
[25 words unchanged]
onwards, as well as to identify any long-term conditions in the mothers.
The purpose of this application falls under Article 6 (1) (e) of the GDPR and the lawful basis for using information collected routinely for administrative purposes for research is the ‘public task’. This is part of the University’s commitment to ‘integrate research and innovation for the long-term benefit of humanity’. The application also falls under Article 9 (2) (j), as scientific research.
The following NHS England data will be accessed:
The study has been designed by UCL researchers without the involvement of the funders (Nuffield Foundation).
• Hospital Episode Statistics Outpatients (HES OP)
There are no alternative, less intrusive ways of achieving the purpose of this study.
• Hospital Episode Statistics Admitted Patient Care (HES APC)
UCL are the sole data controller who also process the data under this agreement.
• Hospital Episode Statistics Accident & Emergency (HEA A&E)
There are no other organisation involved in the study other than those referenced.
• HES: Civil Registration (Deaths) bridge
• Civil Registrations of Death - Secondary Care Cut
Access to these datasets is necessary to asses risk factors and outcomes in mothers subject to care proceedings.
The Cafcass extract used for this study will be minimised by the UCL research team to only contain information on women aged 15-50 years who were party to section 31 applications (care proceedings where local authorities apply to have a child removed from parental supervision due to serious concerns for the child safety and wellbeing). The extract will contain demographic information on the mothers (date of birth, local authority of residence), information on the children subject to the case (number of children, month and year of birth, sex), and information on the care proceedings (hearing dates, final legal output).
The Cafcass data is held by the Children and Family Court Advisory and Support Service, and available for researchers upon request. (Research must be approved by the Cafcass Research Advisory Committee. The committee checks if the proposed research is feasible, as well as beneficial for Cafcass and for children and families using the service. The research will only be approved if it is relevant to Cafcass' statutory remit and strategic aims. In this case, the committee has approved the UCL project as being done in accordance with CJCSA section 13 and falling within its strategic aims).
The level of the data will be:
• Pseudonymised
Identifiable data was processed for the previous iteration of this DSA (v0.11), this was necessary to enable linkage of the data with data from Cafcass. There will no new data linkage taking place as a part of this DSA, therefore no further processing or flow of identifiable data will take place under this DSA.
The data will be minimised as follows.
• Limited to a study cohort of women who had a live birth while between the ages of 15 and 50 years old between the period from 1 April 1997 to 1 April 2017
• Limited to data between 01/04/1997 and 31/03/2023 - data will be obtained by UCL under a separate DSA (ref: DARS- NIC-393510-D6H1D). UCL will access HES APC, A&E, HES OP data and Civil Registration (deaths) records for the study cohort described above.
UCL is the research sponsor and the controller as the organisation responsible for ensuring that the data will only be processed for the purpose described above.
The lawful basis for processing personal data under the UK GDPR is:
Article 6(1)(e) - processing is necessary for the performance of a task carried out in the public interest or in the exercise of official authority vested in the controller;
The lawful basis for processing special category data under the UK GDPR is:
Article 9(2)(j) - processing is necessary for archiving purposes in the public interest, scientific or historical research purposes or statistical purposes in accordance with Article 89(1) based on Union or Member State law which shall be proportionate to the aim pursued, respect the essence of the right to data protection and provide for suitable and specific measures to safeguard the fundamental rights and the interests of the data subject.
It is in the public interest because the research influences Department of Health policy makers, service providers, healthcare professionals and the general public. This directly benefits the health of mothers involved in care proceedings and the healthcare provided to mothers at risk of care proceedings in the here and now and this is key to reducing future burden on the NHS and social care services.
The funding is provided by the Nuffield Foundation. The funding is specifically for the project described.
The funder will have no ability to suppress or otherwise limit the publication of findings.
Amazon Web Services (AWS) is a processor acting under the instructions of UCL. AWS’ role is limited to secure back-up of data stored in UCL’s Data Safe Haven.
UCL uses offsite data centre services provided by VIRTUS data centre. VIRTUS does not have access to the data.
Data will be accessed by PhD students affiliated with UCL. Any student working with the Data held under this DSA must have completed relevant data protection and confidentiality training and are subject to UCL’s policies on data protection and confidentiality. Any students accessing the Data will do so under the supervision of a substantive employee of UCL. UCL would be responsible and liable for any work carried out by students. These students would only work on the Data for the purposes described in this DSA.
Previous public and patient engagement work for this data linkage project has helped to identify further stakeholders to engage with this work. UCL will continue to undertake public and patient engagement work to support interpretation of findings and to discuss methods of sharing study findings to ensure findings are accessible to both policy, practitioners and the study population. The group strongly supported the collection of the data for the purposes described above.
Processing activities
Data sources
As data linkage has been completed, no further data will flow to NHS England under this DSA. Previous data flows are described below for reference.
The datasets to be linked are:
Cafcass supplied NHS England with a list of identifier variables for women aged 15-50 years involved in section 31 care proceedings, including name (first and surname) date of birth, local authority of residence during care proceeding and postcode histories, alongside a study specific pseudo-identifier number (pseudo-study ID) for mothers involved in care proceedings in England that started between 1 April 2007 and 31 March 2022. Only identifiers for women aged 15 to 50 years involved in section 31 proceedings were transferred. No other Cafcass data will flow. The flow of identifying data from Cafcass to NHS England is Practice Direction 12G which enables Cafcass to lawfully share information about family court proceedings for the purposes of an approved research project.
1) Hospital Episode Statistics (HES APC, A&E and OPD) and death registration data which contains details of all hospital contacts and deaths in NHS hospitals in England collected from 1 April 1997 to date (data UCL already hold under NIC-393510-D6H1D). Women aged between 15 and 50 years, with at least one live birth recorded in the Hospital Episodes Database between 01/04/1997 and 31/03/2017 will be extracted to make up the cohort to be liked with the Cafcass data.
These identifiers were linked to records held in the Master Patient Service (MPS). The identifiable information disclosed by Cafcass was used by NHS England to facilitate linkage with the MPS data in order to identify patients within the HES data.
2) The Children and Family Court Advisory and Support Service database (Cafcass) contains information on family care proceedings, including demographic information on persons involved in court applications (adults and children), hearing and application dates, and proceeding outcomes. Data is available from Cafcass from 2007 onwards. The Cafcass extract used for this study will be minimised to only contain information on women aged 15-50 years who were party to section 31 applications (care proceedings where local authorities apply to have a child removed from parental supervision due to serious concerns for the child safety and wellbeing). Cafcass will minimise the data in this way before it is sent to UCL. The extract will contain demographic information on the mothers (date of birth, local authority of residence), information on the children subject to the case (number of children, month and year of birth, sex), and information on the care proceedings (hearing dates, final legal output).
A linked file was created, with the pseudo-study ID provided by Cafcass and the matching Token Person ID as recorded in MPS. The national data opt-out was then applied to this linked file and anyone from the Cafcass cohort who has opted out of having their data shared for research or planning purposes was removed from the linked file.
The study cohort will include all women for whom a section 31 application has been made (by an English local authority) concerning their child(ren) between April 2007 and March 2019. Though most section 31 applications result in a section 31 order being made, a considerable number result in children being placed with extended family under private law orders (such as a Special Guardianship Order) and a small number of applications are dismissed or are subject to an ‘Order of No Order’. Each of these outcomes are equally as important, particularly when considering the heterogeneity of this study population with respect to identifying risk factors for returning to court for subsequent s31 court proceedings.
NHS England disclosed a file of pseudonymised Token Person IDs for women within the Cafcass dataset to UCL to enable linkage with this existing HES-Civil Registrations extract for the purpose of this study. The NHS England file did not contain the NHS Number or the postcode.
To mitigate the risk of re-identification, identifiers will be used by the trusted third party (NHS Digital) to carry out the link between the two data sets (Cafcass and HES, via PDS), the final analysis file will only contain pseudonymised non-sensitive variables.
- NHS England transferred to UCL a list of pseudonymised study IDs for women who linked and encrypted Token Person IDs for women who link and women who do not link.
Data flow:
There will be no requirement or attempt to re-identify individuals.
• Cafcass will supply NHS Digital with a list of identifier variables for women aged 15-50 years involved in section 31 care proceedings, including name (first and surname) date of birth, local authority of residence during care proceeding and postcode histories, alongside a study specific pseudo-identifier number (pseudo-study ID) for mothers involved in care proceedings in England that started between 1 April 2007 and 31 March 2017. Only identifiers for women aged 15 to 50 years involved in section 31 proceedings will be flowing. No other Cafcass data will flow. The flow of identifying data from Cafcass to NHS Digital is Practice Direction 12G which enables Cafcass to lawfully share information about family court proceedings for the purposes of an approved research project.
The data will not be transferred to any other location.
These identifiers will be linked to records held in the Patient Demographic Service (PDS) using an algorithm that prioritises the most recent postcode in Cafcass (at the end of the last case the woman was involved in). The identifiable information disclosed by Cafcass will be used by NHS Digital to facilitate linkage with the Personal Demographics Service (PDS) data in order to identify patients within the HES data.
The data will be stored in the UCL Data Safe Haven (DSH).
• For the remaining unmatched Cafcass records, the second postcode in Cafcass will then be compared with PDS as above. This approach will be repeated up to a maximum of 3 postcodes in Cafcass. (Only up to 3 postcodes per person are available from Cafcass for linkage but UCL would expect NHS Digital to compare these with up to 5 postcodes from the PDS).
The UCL DSH uses Dual Factor Authentication to access and handle data transferred into the DSH service. This ensures that only the named applicants will have access to the data from DSH. Removing data from the Data Safe Haven is only allowed for the Principal Investigator. The DSH operates as a walled space and researchers are not able to connect to the internet or export data from it.
• A linked file will be created, with the pseudo-study ID provided by Cafcass and the matching NHS number and postcode as recorded in PDS.
Amazon Web Services provides cloud hosting services to UCL and will store the data as contracted by UCL.
• The national data opt-out will then be applied to this linked file and anyone from the Cafcass cohort who has opted out of having their data shared for research or planning purposes will be removed from the linked file.
UCL uses offsite data centre services provided by VIRTUS data centre.
• UCL will use HES data from an existing data extract (NIC-393510-D6H1D) which is currently held by UCL to create a minimised extract containing HES APC, A&E, Outpatient data and Civil Registration data on only women who had a record of a live birth between the ages of 15 and 50 years old between 1 April 1997 and 31 March 2017.
The data will be accessed by authorised personnel via remote access. The data will remain on the UCL Data Safe Haven at all times.
NHS Digital will disclose a file of pseudonymised HES-IDs for women within the Cafcass dataset to UCL to enable linkage with this existing HES-Civil Registration extract for the purpose of this study. The NHS Digital file will not contain the NHS Number or the postcode.
The data will not leave England at any time.
• NHS Digital will retain the identifier file of all individuals linked in Cafcass-PDS and PDS-HES and all the postcodes used in linkage and postcode dates for 12 months to address data queries. This data set will not contain any attribute data and will be held separately from the final analysis file.
Access is restricted to substantive employees of UCL or PhD students who have authorisation from the principal investigator.
• NHSD will transfer to UCL a list of pseudonymised study IDs for women who link and encrypted HES-IDs for women who link and women who do not link.
UCL will not link the Cafcass cohort linked to HES and Civil Registration data disseminated under the separate DSA (ref: DARS-NIC-393510-D6H1D) to any of the other datasets held under that separate DSA.
There will no requirement or attempt to re-identify individuals.
All personnel accessing the data have been appropriately trained in data protection and confidentiality.
Data processing is only carried out by substantive employees of UCL who have been appropriately trained in data protection and confidentiality. The data requested will be kept in UCLs Data Safe Haven (DSH). A file transfer mechanism enables information to be transferred into the Safe Haven simply and securely.
The data linkage has been completed under the original Agreement and no further data linkage will take place. The data linkage details are retained below for information purposes.
The UCL DSH uses Dual Factor Authentication to access and handle data transferred into the DSH service. This ensures that only the named applicants will have access to the data from DSH. Removing data from the Data Safe Haven is only allowed for the Principle Investigator.
The datasets that were linked are:
UCL will not attempt to link the Cafcass cohort linked to HES and Civil Registration data disseminated under NIC-393510-D6H1D to any of the other datasets held under NIC-393510-D6H1D.
1) Hospital Episode Statistics (HES APC, A&E and OPD) and death registration data which contains details of all hospital contacts and deaths in NHS hospitals in England collected from 1 April 1997 to 31 March 2023 (data UCL already hold under NIC-393510-D6H1D). Women aged between 15 and 50 years, with at least one live birth recorded in the Hospital Episodes Database between 01/04/1997 and 01/04/2017 were extracted to make up the cohort to be liked with the Cafcass data.
2) The Children and Family Court Advisory and Support Service database (Cafcass) contains information on family care proceedings, including demographic information on persons involved in court applications (adults and children), hearing and application dates, and proceeding outcomes. Data is available from Cafcass from 2007 onwards.
The study cohort includes all women for whom a section 31 application has been made (by an English local authority) concerning their child(ren) between April 2007 and March 2022. Though most section 31 applications result in a section 31 order being made, a considerable number result in children being placed with extended family under private law orders (such as a Special Guardianship Order) and a small number of applications are dismissed or are subject to an Order of No Order. Each of these outcomes are equally as important, particularly when considering the heterogeneity of this study population with respect to identifying risk factors for returning to court for subsequent s31 court proceedings.
To mitigate the risk of re-identification, identifiers were used by the trusted third party (NHS England) to carry out the link between the two data sets (Cafcass and HES, via MPS), the final analysis files only contains pseudonymised non-sensitive variables.
There will be no requirement and no attempt to reidentify individuals when using the data.
Researchers from UCL will analyse the data for the purposes described below.
[2 paragraphs unchanged]
•
As a first step, UCL will determine the proportion of mothers in
[28 words unchanged]
violence, chronic conditions, or young age (<20 years) at (previous) live birth).
•
UCL will determine the frequency of hospital contacts (planned and unplanned) for
[70 words unchanged]
women are at risk of exacerbation's such as self-harm admissions during proceedings).
From previous research as part of the Children Policy Research
Unit (NIC-393510)
Unit,
UCL will have information on the sub-cohort of mothers with history of
[19 words unchanged]
whole population, for instance the rates and ages at first live birth.
•
The main analyses for question 1 will determine whether there are specific
[56 words unchanged]
(e.g. at antenatal care, or during hospitalisation prior to pregnancy or birth).
•
In secondary analyses, UCL will determine whether associations between healthcare risk factors
[49 words unchanged]
or treatment for mental health problems, which might improve capacity to parent.
•
UCL will use multiple regression techniques to study these associations. This will
[16 words unchanged]
for risk factors such as area-based deprivation levels and underlying health needs.
[1 paragraph unchanged]
•
Two key outcomes for question 2 are the timing of subsequent pregnancies
[33 words unchanged]
but it is not currently known how many women have subsequent pregnancies.
•
UCL will also analyse a range of secondary outcomes obtained from the
[10 words unchanged]
death. Assessing these outcomes will allow UCL to examine how indicators of
healthcare need are associated with the primary outcome ʹtiming of subsequent pregnancies and care
proceedings. Findings from these analyses will inform inferences about whether input from healthcare might help prevent further care proceedings.
•
UCL will use multivariable survival analyses to determine time to next pregnancy
[102 words unchanged]
be used to identify mothers most likely to experience further care proceedings.
•
The analyses will quantify the relative contribution of health events and healthcare
[44 words unchanged]
potential for healthcare interventions to reduce the risk of subsequent care proceedings.
[3 paragraphs unchanged]
No new data will flow to UCL (University College London) for the
[19 words unchanged]
UCL are not requesting any additional data on hospitalisations, A&E attendances, outpatient
appoints,
appointments,
or civil registrations to flow between NHS
Digital
England
and
UCL.
UCL under this agreement.
UCL requires data on the whole-population (i.e. all women with a live
[57 words unchanged]
and local population characteristics vary considerably across England, as well as by
time (i.e. 2007 to 2019).
time.
Understanding differences by area and time are crucial to ensuring any study finding are generalisable and relevant to both national and local policy makers and service planners.
For some analyses UCL must use statistical matching methods to match mothers
[47 words unchanged]
etc). The variables used in matching, as well as the timing for
‘baseline’
baseline
measurements, will vary by analyses dependent on the study outcome. In order
[34 words unchanged]
admissions) UCL require a sufficient number of controls to robustly model outcomes.
The proposed control group would not result in any additional data flowing between NHS
Digital
England
and UCL, and a lack of a whole-population control group would impact
[23 words unchanged]
inform policy and practice at the local as well as national level.
Expected output
The research will inform Department of Health and Social Care and Ministry of Justice policy makers, service providers and practitioners about patient and service factors associated with the health needs of mothers and children involved in care proceedings in family court. UCL will work with the funder, the Nuffield Foundation to organise a symposium inviting key policy makers and scientists to showcase the findings.
The expected outputs of the processing will be:
Additionally, UCL will share results with patients who are part of a mental health service user group based at King’s College London and PAUSE, a charity working with women who have experienced, or are at risk of, repeat removals of children from their care. https://www.pause.org.uk/about-us/
• A report of findings to the Nuffield Foundation at the end of the project with an overview of the research findings.
UCL has also formed a project advisory group that includes six leading practitioners from across health, family justice and child safeguarding. Part of UCL’s planned discussions with this group will include identifying ways to improve communication about this project and to identify a wide range of organisations including within health, children’s social care, family justice and the voluntary sector with which to share study findings. This group includes a PAUSE practice lead and the programme manager for SHRINE (a human rights -based service in South London delivering sexual and reproductive healthcare to marginalised populations including people with serious mental illness or substance misuse).
• Submissions to peer reviewed journals such as the International Journal of Population Data Science, Lancet Public Health or Archives of Disease in Childhood in 2024 and 2025.
Previous public and patient engagement work for this data linkage project has helped to identify further stakeholders to engage with this work. UCL will continue to undertake public and patient engagement work to support interpretation of findings and to discuss methods of sharing study findings to ensure findings are accessible to both policy, practitioners and the study population.
• Presentations to the Ministry of Justice Areas of Research Interest (ARI) academic seminar series, Cafcass analytical team, Nuffield Foundation
The findings will be published in peer reviewed journals and reports prepared for the funder, the Nuffield Foundation.
• Presentations at appropriate conferences such as the, International Population Data Linkage Conference, International Society for the Prevention of Child Abuse and Neglect, Royal College of Paediatrics and Child Health annual conference, and Informatics for Health conference
The papers resulting from these studies will be published in peer-reviewed journals (such as the Lancet, Archives of Disease in Childhood, PLoS Medicine, BMJ Open) and presented at scientific conferences (such as the, International Population Data Linkage Conference, International Society for the Prevention of Child Abuse and Neglect, Royal College of Paediatrics and Child Health annual conference, and Informatics for Health conference).
The outputs will not contain NHS England data and will only contain aggregated information with small numbers suppressed as appropriate in line with the relevant disclosure rules for the dataset(s) from which the information was derived.
UCL aim to present the work at scientific conferences during 2021 and use feedback provided at these meetings to write up papers to be submitted for publication in 2021.
The outputs will be communicated to relevant recipients through the following dissemination channels:
Outputs will be aggregated with small numbers suppressed in line with the HES analysis guide.
• Journals
• Public reports
• Press/media engagement
Expected measurable benefits
The research will inform Department of Health and Social Care and Ministry of Justice policy makers, service providers and practitioners about patient and service factors associated with the health needs of mothers and children involved in care proceedings in family court. UCL will work with the funder, the Nuffield Foundation to organise a symposium inviting key policy makers and scientists to showcase the findings. UCL has also formed a project advisory group that includes six leading practitioners from across health, family justice and child safeguarding. Part of UCL’s planned discussions with this group will include identifying ways to improve communication about this project and to identify a wide range of organisations including within health, children’s social care, family justice and the voluntary sector with which to share study findings. This group includes a PAUSE practice lead and the programme manager for SHRINE (a human rights -based service in South London delivering sexual and reproductive healthcare to marginalised populations including people with serious mental illness or substance misuse). The use of the data could: • help the system to better understand the health and care needs of populations. • advance understanding of regional and national trends in health and social care needs. • support knowledge creation or exploratory research (and the innovations and developments that might result from that exploratory work). [8 paragraphs unchanged] It is hoped that through publication of findings in appropriate media, the findings of this research will add to the body of evidence that is considered by the bodies, organisations and individual care practitioners charged with making policy decisions for or within the NHS or treatment decisions in relation to specific patients. UCL will share results with patients who are part of a mental health service user group based at King’s College London and PAUSE, a charity working with women who have experienced, or are at risk of, repeat removals of children from their care. https://www.pause.org.uk/about-us/
Benefits reported
Yielded Benefits is not a requirement for new applications.
The data linkage was only recently completed, benefits are expected to be yielded from 2024 onwards.
DARS-NIC-196263-J9Q7Z-v0.11 1 December 2020 to 30 November 2023
- Title
- Understanding the health needs of mothers involved in family court cases
- Commercial
- No
- Sublicensing
- No
- Datasets
- 7
- Files released
- 1
Datasets: Civil Registrations of Death - Secondary Care Cut; HES:Civil Registration (Deaths) bridge; Hospital Episode Statistics Accident and Emergency (HES A and E); Hospital Episode Statistics Admitted Patient Care (HES APC); Hospital Episode Statistics Outpatients (HES OP); MRIS - Bespoke; MRIS - List Cleaning Report
Objective for processing
University College London (UCL) are proposing to link an existing cohort of mothers and babies (held by the research team under a separate Data Sharing Agreement (DSA) with UCL; NIC-393510-D6H1D) with programme information from the Children and Family Court Advisory and Support Service (Cafcass). Women aged between 15 and 50 years, with at least one live birth recorded in the Hospital Episodes Database between 01/04/1997 and 31/03/2017 will make up the cohort. It is estimated that there will be a maximum of 12 million women in this cohort. This cohort of women will be linked to Cafcass data on women involved in care proceedings between 01/04/2007 and 31/03/2019, which includes 113,191 mothers. Those women who are not linked to Cafcass data will act as a control cohort for analysis. This will allow UCL to compare women linked in the Cafcass data to the general population of women giving birth as 97% of women in England who give birth in NHS hospitals.
The Cafcass extract used for this study will be minimised by the UCL research team to only contain information on women aged 15-50 years who were party to section 31 applications (care proceedings where local authorities apply to have a child removed from parental supervision due to serious concerns for the child safety and wellbeing). The extract will contain demographic information on the mothers (date of birth, local authority of residence), information on the children subject to the case (number of children, month and year of birth, sex), and information on the care proceedings (hearing dates, final legal output).
The Cafcass data is held by the Children and Family Court Advisory and Support Service, and available for researchers upon request. (Research must be approved by the Cafcass Research Advisory Committee. The committee checks if the proposed research is feasible, as well as beneficial for Cafcass and for children and families using the service. The research will only be approved if it is relevant to Cafcass’ statutory remit and strategic aims. In this case, the committee has approved the UCL project as being done in accordance with CJCSA section 13 and falling within its strategic aims).
The data under NIC-393510-D6H1D is disseminated for a programme of research within the healthcare provision theme of the Policy Research Unit for Children, Young People and Families (CPRU), within University College London (UCL) which is funded by the Department of Health and Social Care (DHSC). The extract of data from NIC-393510-D6H1D for the purpose of this agreement NIC-196253 will only contain HES APC, A&E, Outpatient data and Civil Registration data on women who had a record of a live birth between the ages of 15 and 50 years old between 1 April 1997 and 31 March 2017.
This request aims to assess the feasibility of using linked health and family court administrative data sets to facilitate research to explore the underlying issues such as long-term health and mental problems. Further, it aims to inform policy about associations between justice system risk factors, such as regional variation in returns to court and health outcomes such as time to next pregnancy, mental health exacerbations during court proceedings.
The study aims to generate evidence about the health needs of mothers involved in public law care proceedings in England. There is clear evidence that mothers, whose children enter public care or are adopted, often have complex health needs, such as drug and/or alcohol misuse, exposure to violence, mental health problems as well as chronic physical conditions.
Key questions are:
Question 1: Are there health characteristics of mothers that are associated with a high likelihood of care proceedings?
Question 2: Among mothers involved with care proceedings, what characteristics are associated with time to subsequent pregnancy, adversity related admissions and adverse outcomes related to court ?
UCL has defined adversity related admissions are admissions related to alcohol- and/or illicit drug use, self-harm, violence and severe mental health. As adverse outcomes, UCL will assess time to next pregnancy (and return to court for further children in the Cafcass data), emergency hospital admissions and deaths.
Key policy questions will be addressed by this study:
1) Is there an unmet burden of health need that could be reduced by interventions in courts, social services or health services;
2) could improved input by healthcare services reduce the chance of being the subject of care proceedings and improve health and welfare outcomes for mother and child.
UCL will attempt to generate research evidence to answer these questions by assessing which health characteristics of mothers are associated with a high likelihood of being involved in care proceedings, and determining what characteristics are associated with time to subsequent pregnancy, adversity related admissions and adverse outcomes related to court.
UCL will explore risk factors known at live birth (such as maternal age, parity, (history of) mental health related admissions, underlying long-term conditions, adversity-related injury admissions) and their association with timing of care proceedings. UCL require whole HES records to assess how and when women use health services, determine whether there is proactive management through outpatients, assess whether health crisis recorded as Accident and Emergency (A&E) attendances or unplanned admissions are related to hearing dates, and asses underlying conditions using women’s medical history as recorded in Hospital Episode Statistics (HES) (e.g. long-term conditions or adversity-related admissions as recorded in ICD-10 or OPCS codes (classification of Interventions and Procedures)). UCL request HES data from 1997 in order to identify the birth episodes for children involved in court cases from 2007 onwards, as well as to identify any long-term conditions in the mothers.
The purpose of this application falls under Article 6 (1) (e) of the GDPR and the lawful basis for using information collected routinely for administrative purposes for research is the ‘public task’. This is part of the University’s commitment to ‘integrate research and innovation for the long-term benefit of humanity’. The application also falls under Article 9 (2) (j), as scientific research.
The study has been designed by UCL researchers without the involvement of the funders (Nuffield Foundation).
There are no alternative, less intrusive ways of achieving the purpose of this study.
UCL are the sole data controller who also process the data under this agreement.
There are no other organisation involved in the study other than those referenced.
Expected output
The research will inform Department of Health and Social Care and Ministry of Justice policy makers, service providers and practitioners about patient and service factors associated with the health needs of mothers and children involved in care proceedings in family court. UCL will work with the funder, the Nuffield Foundation to organise a symposium inviting key policy makers and scientists to showcase the findings.
Additionally, UCL will share results with patients who are part of a mental health service user group based at King’s College London and PAUSE, a charity working with women who have experienced, or are at risk of, repeat removals of children from their care. https://www.pause.org.uk/about-us/
UCL has also formed a project advisory group that includes six leading practitioners from across health, family justice and child safeguarding. Part of UCL’s planned discussions with this group will include identifying ways to improve communication about this project and to identify a wide range of organisations including within health, children’s social care, family justice and the voluntary sector with which to share study findings. This group includes a PAUSE practice lead and the programme manager for SHRINE (a human rights -based service in South London delivering sexual and reproductive healthcare to marginalised populations including people with serious mental illness or substance misuse).
Previous public and patient engagement work for this data linkage project has helped to identify further stakeholders to engage with this work. UCL will continue to undertake public and patient engagement work to support interpretation of findings and to discuss methods of sharing study findings to ensure findings are accessible to both policy, practitioners and the study population.
The findings will be published in peer reviewed journals and reports prepared for the funder, the Nuffield Foundation.
The papers resulting from these studies will be published in peer-reviewed journals (such as the Lancet, Archives of Disease in Childhood, PLoS Medicine, BMJ Open) and presented at scientific conferences (such as the, International Population Data Linkage Conference, International Society for the Prevention of Child Abuse and Neglect, Royal College of Paediatrics and Child Health annual conference, and Informatics for Health conference).
UCL aim to present the work at scientific conferences during 2021 and use feedback provided at these meetings to write up papers to be submitted for publication in 2021.
Outputs will be aggregated with small numbers suppressed in line with the HES analysis guide.
Benefits reported
Yielded Benefits is not a requirement for new applications.
Register history
When this agreement appeared in, or was edited in, each monthly edition of the register. Built by comparing every edition this site holds, the earliest of which is July 2021.
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July 2021 —
already listed in the earliest edition this site holds, so it may be older. 1 version: DARS-NIC-196263-J9Q7Z-v0.11
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December 2022
Register-wide edit DARS-NIC-196263-J9Q7Z-v0.11 — Datasets: legal basis: “
s261(1) and” taken out. Made to 639 agreements in this edition, so it is reported once, on the changes page, and not counted as an amendment of this agreement. -
April 2024
1 version added: DARS-NIC-196263-J9Q7Z-v1.4
Cite this page
NHS England (2026) Data Uses Register, September 2026 edition, agreement DARS-NIC-196263-J9Q7Z, “Understanding the health needs of mothers involved in family court cases”. Read via NHS Data Access Explorer (unofficial), https://healthdatauses.uk/agreements/dars-nic-196263-j9q7z/ (accessed [date]).
This address stays the same, but the page is rebuilt with each monthly edition, so the citation names the edition it shows. Every edition's data is kept in the facts store.
Source: datausesregister_september2026.xlsx, September 2026 edition of the NHS England Data Uses Register. Search that workbook for DARS-NIC-196263-J9Q7Z to see the original rows.