Female Genital Mutilation (FGM) Enhanced Dataset: consultation 2024
Read about our consultation proposals, and how you can provide your views.
About the Female Genital Mutilation (FGM) Enhanced Dataset
The FGM Enhanced Dataset (FGMED) collects data on FGM related attendances in healthcare settings (healthcare providers in England, including acute hospitals, mental health services and GP practices). It supports the Department of Health and Social Care’s (DHSC) FGM Prevention Programme by presenting a greater understanding of the extent and issue of FGM identified by the NHS in England.
NHS England is commissioned by DHSC to collect data for the FGM Enhanced Dataset and publish quarterly official statistics reports.
Individual-level data is collected by healthcare providers in England, including acute hospitals, mental health services and GP practices. The data items collected for the FGM Enhanced Dataset are obtained during the standard delivery of patient care where it is identified that patient has had FGM. The data collection does not require professionals to ask additional questions about FGM beyond those necessary for the patient’s treatment.
The anonymised data is used to produce information that helps to:
- improve how the NHS supports women and girls who have had or who are at risk of FGM
- plan the local NHS services needed both now and in the future
- help other organisations to develop plans to stop FGM happening in local communities and improve multi-agency working
The FGM Enhanced Dataset was first collected in 2015. As the dataset has been in place for 8 years, DHSC commissioned NHS England to carry out a review of the FGM Enhanced Dataset to ensure it is still fit for purpose, the key information is provided in a least burdensome and sensitive manner and improve the completeness and quality of the data.
As part of the review several tasks were carried out to understand the quality of the FGM Enhanced Dataset. A data quality exercise was completed with some acute and mental health providers where they had not submitted any data or had poor submission of data in the past 3 years to understand the reasons and barriers for this. Poor submission included infrequent submission, sudden low numbers, one-off submission or stopped.
NHSE completed a data quality analysis of the FGM Enhanced Dataset to look at the level of completion, where the data item is mandatory, required or optional and whether the data is used in the publication outputs across all data items.
DHSC and NHSE colleagues held discussions with GPs to understand the specific issues and barriers in collecting the data within a GP setting and what would help improve the process.
Lastly a short survey was conducted to get initial views from stakeholders about which information contained in the FGM Enhanced dataset is useful, how it is used and any information that may be missing. Feedback was received from Government partners, health partners, local government, police, universities and third sector organisations.
All the information gathered from these different elements have been reviewed and led to the proposals shown below.
Proposals and rationale
The aim of the proposals set out in this section is to focus on the key information needed to support and develop FGM services and to reduce the data collection burden on healthcare providers whilst improving data quality.
Proposal 1 - Data items to stop collecting
The first proposal is to stop collecting some data items for FGM Enhanced Dataset.
The following information was used to identify data items to stop collecting:
- Data completion rates (none of these proposed data items are mandatory).
- Data collection difficulty (for example, some questions are very personal, and some questions may ask for information that the patient does not know).
- Data collection duplication (for example, if other patient information can be used instead).
- Purpose for collecting data item.
- Feedback from users of the data through a short user survey.
Table 1: data items that we propose to stop collecting and rationale
| Data item | Rationale |
|---|---|
| Region of country of origin | Poor completion, difficult to collect and not used for direct care purposes |
| Referring organisation code | Poor completion, and Referring Organisation Type is more widely completed and used |
| Pregnancy status indicator | Not required as can use Treatment Function Area, such as midwifery |
| FGM family history indicator | Difficult to collect, a family history of FGM is expected for survivors of FGM and not used for direct care purposes |
| Number of daughters under 18 | Purpose is unclear, user survey responses ranked this as a low priority and not used for direct care purposes |
| Daughters born at this attendance | Purpose is unclear, user survey responses ranked this as a low priority and not used for direct care purposes |
| Country of birth of baby's father | Difficult to collect and not used for direct care purposes |
| Country of origin of baby's father | Difficult to collect and not used for direct care purposes |
| Age range when FGM was undertaken | Not required as this information is well known and documented at population level elsewhere already. Not used for direct care purposes, often not known by the survivor |
Proposal 2 - Data items to continue collecting
The same information as above was used to identify which data items to continue collecting.
Table 2 shows these data items along with the current submission requirements i.e. if data item is mandatory1, required2 or optional3.
For the data items that are proposed to continue, there are some proposed changes to submission requirements for some data items along with other proposed actions like developing more guidance or changes to response categories. Table 2 also provides a purpose for including each data item in FGMED.
Table 2: data items that we propose to continue collecting and rationale
| FGMED data item | Submission requirements | Proposed changes | Purpose for inclusion in dataset |
|---|---|---|---|
| Provider Organisation | Required | N/A | Used to identify which organisation the FGM activity relates to |
| NHS Number | Required | N/A | This data is required to link multiple records about the same person to get a unique count of individuals4 |
| Local Patient Identifier | Optional | N/A | Used locally to identify patient to link multiple records about the same person to get a unique count of individuals4 |
| Person Birth Date | Required | Change to Mandatory | This data is required to link multiple records about the same person to get a unique count of individuals4 |
| Postcode Of Usual Address | Mandatory | N/A | This data is required to link multiple records about the same person to get a unique count of individuals4 |
| Forename | Mandatory | N/A | This data is required to link multiple records about the same person to get a unique count of individuals4 |
| Surname | Mandatory | N/A | This data is required to link multiple records about the same person to get a unique count of individuals4 |
| Country Of Birth | Required | Include extra information for women as to why it’s being asked | This question is only asked if it is discussed as part of the care conversation. It helps to understand where FGM influence may occur |
| Country Of Origin | Required | Develop more guidance & training, include extra information for women as to why it’s being asked | This question is only asked if it is discussed as part of the care conversation. It helps to understand where FGM influence may occur |
| GP Registration Code | Mandatory | N/A | Used to identify which organisation the FGM activity relates to |
| Care Contact Date | Mandatory | N/A | Helps to understand if people are using service. This field is used to provide activity breakdowns by timeframe |
| Referring Organisation Type | Required | Change to Mandatory | Helps to understand where increased awareness of FGM services may be required |
| Site Code Of Treatment | Required | N/A | Helps to understand where services are being used |
| Treatment Function Area | Required | Change to Mandatory | Helps to understand where services are being used in more detail, such as maternity, and urology |
| Female Genital Mutilation Identification | Mandatory | Review wording | Helps to understand if women self identify or if FGM is picked up as part of care |
| Advised On Health Implications Of FGM | Required | Change to Mandatory, improve guidance and add additional categories like 'not appropriate'. Include extra information for women as to why it’s being provided and add linking with FGM services | To promote awareness of health implications of FGM. May help identify other health needs not previously reported |
| Advised On Illegalities Of FGM | Required | Change to Mandatory, improve guidance and add additional categories like 'not appropriate'. Include extra information for women as to why it’s being given and add linking with FGM services | To inform people about the law to promote safeguarding and awareness. Must be done by people who have had further training, such as required safeguarding |
| FGM Type | Mandatory | Include extra information for women as to why it’s being asked and add linking with FGM services | Helps to inform what type or service may be required. ONLY capture this data item if known or if examination is part of care. NO need to examine to submit to data set |
| FGM Type4 Qualifier | Optional | Change to Mandatory, develop the guidance & training and add categories of ‘elongation’, ‘other’ and ‘unknown’. Include extra information for women as to why it’s being asked and add linking with FGM services | Helps to inform what type or service may be required |
| Country Where FGM Was Undertaken | Required | Change to Mandatory and add ‘unknown’ as a category | Helps to understand where FGM occurs |
1These data items must be included. Failure to submit these items will result in the rejection of the submission.
2These data items should be reported where they apply. Failure to submit these items will not result in the rejection of the submission but they may affect the derivation of national indicators or national analysis.
3These data items may be submitted on an optional basis at the submitter’s discretion.
4Patient identifiable data is being collected as part of the current process to ensure data quality and to avoid duplication of records. This will remove the potential for double-counting, which was possible in the earlier FGM Prevalence Dataset, as it collected aggregated data only.
Patients may be entered into the FGM Enhanced Dataset without an NHS number, but information associated with these patients will not be included in reports until they are recorded with an NHS number, to avoid double counting of patients and attendances.
In addition, once the details of a new patient are added to the data collection system, for subsequent attendances data providers only need to enter the NHS Number which then brings up all the pre-entered PID data, hence reducing the burden.
Proposal 3 - Potential new data items to collect
Data from the user survey and discussions with stakeholders highlighted one new data item that we propose to collect:
Have you offered any further information or advice to the patient?
Categories (finalised list to be confirmed):
- FGM clinics
- local support services and charities
- patient leaflets
A question has also been added into the consultation asking respondents if there are any other data items they would like to include along with the rationale and use of the new data item.
Proposal 4 - Different types of data collection in different settings
The experience of the dataset to date suggests that for some settings, the process is not working. For example there are very few responses from general practice.
This is complex but could reflect that in general practice people are seen with all of their health needs. Asking repeatedly about FGM is not appropriate or always relevant. This makes the current data form very difficult to navigate.
This proposal is to have different types of data collection in different settings to ensure the most appropriate information is collected to inform commissioners about local care needs but also to ensure a trauma informed approach to asking about FGM.
Proposal 5 – Frequency of data quality reports
Currently NHS England produce data quality reports for all data providers every quarter. To help reduce the burden on data providers it is proposed to reduce the frequency of data quality reports from quarterly to annual. Therefore, each quarter the data would be provisional and the annual report would be based on final data following the annual data quality process.
Proposal 6 – Opinion on adding information to health forms
DHSC would like to understand how people would feel about being asked if they have been subjected to FGM on patient forms and verbally so have included a question within the consultation to seek views. The feedback will help support the development of training and guidance of when and where best to ask people about FGM using a trauma-informed approach.
Consultation questions
FGM consultation questionnaire
We would be grateful if you could complete the FGM consultation questions to provide your views on the information needed to support and develop FGM services whilst reducing the data collection burden on healthcare providers.
The results from this survey will inform changes to the FGM Enhanced Dataset.
We would be grateful if you could complete it by the end of Wednesday 10 April 2024.
Next steps
In parallel with this public consultation a few focus groups will be run with FGM impacted communities to look at some of the barriers to collecting the information in order to develop better guidance and training for healthcare providers.
A separate cross-government public consultation is looking at the outputs of all health and social care publications, including the Female Genital Mutilation (FGM) publication. As part of this it is proposed to stop the quarterly FGM report (summary, written report and Excel tables) but retain the quarterly dashboard and csv file, and also retain the annual report. There will be no loss of data but a reduction in products.
Thank you for contributing to this consultation. The results of the consultation and a decision about the future of the FGM Enhanced Dataset will be published later in 2024.
Last edited: 17 January 2024 10:38 am