Female Genital Mutilation (FGM) Enhanced Dataset consultation 2024: results and recommendations

The Department of Health and Social Care (DHSC) commissioned NHS England (NHSE) to carry out a review of the Female Genital Mutilation Enhanced Dataset (FGMED) to ensure it is still fit for purpose, the information is provided in a simple and sensitive manner, and to improve the completeness and quality of the data.

The review of the dataset resulted in six proposals. FGMED stakeholders were consulted on these proposals through an online questionnaire.

This paper summarises the review, provides details of the consultation and results and sets out recommendations and next steps.

The review focussed on three areas: data quality; barriers to data collection and data usage.

Data quality

Data quality was assessed through looking at the data completeness of each data item (the extent to which each data item required is present within the FGMED). Data items with low completion were then further investigated to understand the barriers to their collection.

Barriers to data collection

Data providers who had poor submission of data in the past three years were contacted to understand the reasons and barriers for this. Additionally, 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.

From these discussions, three main barriers to collection emerged:

1. Difficulty: the patient may not know the information (e.g. age FGM occurred) or the requested information is very personal, and the patient does not want to provide it and/or the clinician feels it is inappropriate to ask at the time.
2. Duplication: other patient information can be used instead and so it is not worthwhile collecting the data item.
3. Purpose: the data item is not used for direct care and the reason for it being collected is unclear and so it is lower priority for collection.

Note: Poor submission included infrequent submission, sudden low numbers, one-off submission or stopped.

Data usage

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.

The information gathered from these three areas was reviewed and led to the proposals shown in the next section.

Overview

The review of the FGMED resulted in six proposals (see below) that were consulted upon.

FGMED stakeholders were consulted on these proposals through an online questionnaire that was available for 12 weeks (17 January to 10 April 2024).

The consultation was emailed to over 800 users identified through: data providers in the FGM data collection system; stakeholder contact lists and through direct email requests. The consultation was also publicised and accessible through the FGMED quarterly report web pages.

Consultation content

The FGM consultation provides full details of the six proposals and the rationale. These are summarised below.

Proposals

1. Data items to stop collecting.
2. Data items to continue collecting.
3. New data items to collect.
4. Different types of data collection in different settings
5. Reduce the frequency of data quality reports from quarterly to annual.
6. Opinion on adding information to health forms.

Rationale

To ensure that the FGMED contains the data required to support and develop FGM services whilst reducing the data collection burden on healthcare providers and minimising intrusive questioning of patients.

Questionnaire

Respondents were asked to complete the FGM consultation questionnaire to provide their views on the proposals. This form is now closed and unavailable online – see appendix A for the questions.

In parallel to the public consultation NHS England and New Step for African Community (NESTAC) ran a series of workshops, with women affected by FGM, to discuss these proposals in further detail and seek their input from a patient perspective. NESTAC, a UK-based charity with extensive experience supporting ethnic minority women affected by FGM, domestic abuse, and other forms of gender-based violence, played a central role in facilitating these sessions across England. The charity created safe and supportive spaces for women to share their experiences and perspectives. These workshops were instrumental in ensuring that the voices of participants were at the heart of the consultation process, providing rich, patient-centred insights to inform the ongoing review and development of the dataset.

Consultation responses

The full results are provided in the detailed findings section and are summarised below.

162 responses were received to the consultation with 90% of these coming from “Health Partners” (including respondents who answered “other” and were allocated to “Health Partners” based on their free text response – see Question 1: Responses by sector for further details). The average time to complete the form was just under 27 minutes.

Respondents were able to provide comments, via follow-up questions, in cases where they did not agree with proposals.

Decision process for proposals

Proposals have been accepted or rejected based on the view of the majority of responses unless specific consultation comments or feedback from the workshops with women affected by FGM indicated that something had been missed.

Headline findings

The headline findings are based on the 162 written responses to the consultation where 90% were from Health Partners, 4% from Third sector organisations, 2% from Government Partners and 4% classified as ‘Other’.

Headline findings are provided below in the same order shown for the proposals above.

• 85% of respondents were happy with the data items that we proposed to stop collecting.
• 86% of respondents were happy with the data items that we proposed to continue collecting.
• 86% of respondents were happy with the new data item that we proposed to collect.
• 93% of respondents did not have any additional data items that they wanted to be collected.
• 74% (excluding respondents who selected “not applicable”) did not think any of the data items that we propose to continue collecting are difficult to collect.
• 62% (excluding respondents who selected “not applicable”) did not highlight any other barriers to collecting the data.
• 86% (excluding respondents who selected “not applicable”) would support different types of data collection in different settings to ensure the most appropriate information is collected.
• 86% supported the proposed reduction of data quality reports from quarterly to annual.
• 39% (excluding respondents who selected “unsure”, the majority of responses were from health partners which may impact the response to this question) of respondents would not mind being asked if they had been subjected to FGM every time they filled in a health registration form.
• In relation to being asked on a health registration form if you have been subjected to FGM, 80% would expect a health professional to follow this up with them.

Detailed findings

Question 1: Responses by sector

What sector do you work in? (if you work across more than one sector, please choose your main sector).

Respondents were given seven options to select: Health Partners; Third Sector Organisations; Government Partners; Member of the public; Member of the public who identifies as being from an FGM impacted community; Royal Colleges; Other.

Of the 162 respondents, nine selected “Other”. Based on their free text response, seven of these respondents were allocated to the pre-defined sectors. For example, respondents giving a free text response that demonstrated they were from a health care organisation were allocated to “Health Partners”.

Due to low respondent counts the following sectors have been combined with “Other”: Member of the public; Member of the public who identifies as being from an FGM impacted community; Royal Colleges. This has been done to reduce the risk of identifying individual respondents.

Table 1: Response by sector

Question 2: Data items to stop collecting

Are you happy with the data items that we propose to stop collecting?

A list of these data items, and the rationale for stopping collecting, is available here.

Table 2: Response to question 2 by sector

• 85% of all respondents were happy with the data items that we proposed to stop collecting.
• Across all sectors at least 50% of respondents were happy with the proposal.

Respondents who answered “no” were asked two follow-up questions:

Question 2a: Please select the data items that you want to continue collecting.

Question 2b: For each data item selected in the previous question, please briefly outline your concerns, and provide a purpose for continuing to collect this data item.

Table 2a: Data items selected to continue collecting by sector

Note: Sectors with no participating respondents for the question are not shown in the tables.

• Data items “FGM family history indicator” and “Number of daughters under 18” were selected most frequently to continue collecting (13 and 12 selections respectively).
• Question 2b responses for “FGM family history indicator” and “Number of daughters under 18” gave the main reasons of risk, safeguarding and, to a lesser extent, prevalence.
• The consultation rationale for stopping collecting “FGM family history indicator” and “Number of daughters under 18” were:
  • FGM family history indicator: Difficult to collect, a family history of FGM is expected for women affected by 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.
• Recommendation: accept the proposal to drop the 9 data items.
• Justification:
  • the proposal received the support of 85% of respondents.
  • safeguarding is covered by Female Genital Mutilation - Information Sharing (FGM-IS). See below for further details.
  • feedback from the workshops for women affected by FGM supported stopping collecting these data items.

Question 3: Data items to continue collecting

Are you happy with the data items that we propose to continue collecting?

A list of these data items, and the purpose for collecting, is available here.

Table 3: Response to question 3 by sector

• 86% of all respondents were happy with the data items that we proposed to continue collecting.
• At least 50% of respondents, from all sectors apart from “Other”, were happy with the proposal.

Respondents who answered “no” were asked two follow-up questions:

Question 3a: Please select the data items that you want to stop collecting.

Question 3b: For each data item selected in the previous question, please briefly outline your concerns, and provide a reason for stopping collecting this data item.

Table 3a: Data items selected to stop collecting by sector

• Data items “Forename” and “Surname” were selected most frequently to stop collecting (14 selections each).

• The main question 3b responses for “Forename” and “Surname” were the purpose and burden of collecting, concerns around confidentiality, the impact on the doctor-patient relationship, and the possibility of using other identifiers to prevent double-counting.
• The purpose for collecting “Forename” and “Surname” is that the data are required to link multiple records about the same person to get a unique count of individuals (i.e. prevent double counting).
• Recommendation: accept the proposal to continue collecting all the remaining data items with a caveat to investigate data processing requirements to ascertain if the collection of names can be made non-mandatory where NHS number has been provided. Additionally, it was agreed that some work is required to improve training and guidance for these data items to address the feedback provided at the workshops for women affected by FGM.
• Justification:
  • the proposal received the support of 86% of respondents.
  • there were no objections to these data items at the workshops for women affected by FGM. This feedback indicated that they do not object to the collection of NHS number, date of birth and home postcode. These were regarded as essential for healthcare purposes. Country of origin was also accepted as being important for aiding understanding of the patient’s culture and beliefs, thereby supporting chosen healthcare approaches and leading to improved healthcare.

Question 4: New data item to collect

Are you happy with the new data item that we propose to collect?

New data item: Have you offered any further information or advice to the patient?

Proposed categories: FGM clinics; local support services and charities; patient leaflets.

Table 4: Response to question 4 by sector

• 86% of respondents were happy with the new data item that we proposed to collect.

• Across all sectors, at least 50% of respondents were happy with the proposal.

Respondents who answered “no” were asked one follow-up question:

Question 4a: Please provide a reason.

• The main question 4a responses were around the additional collection burden and the lack of locally accessible services. Several responses did not directly address the question but instead urged that the collection be discontinued for a range of reasons.

• Recommendation: accept the proposal but to add two further categories:
  1. “National support services” – this is an alternative where there is a lack of locally accessible services.
  2. “Considered and offered where appropriate” – this provides an option when further information was already offered at a previous attendance.

Guidance will be developed to ensure that patients understand the purpose in collecting this data item.

• Justification:
  • the proposal received the support of 86% of respondents.
  • to drive positive clinical improvements.
  • feedback at the workshops for women affected by FGM was neutral if purpose is clearly explained.

Question 5: Additional data items

Do you have any additional data items that you would like to be collected?

Table 5: Response to question 5 by sector

• 93% of respondents did not have any additional data items that they wanted to be collected.
• Across all sectors, at least 50% of respondents did not want any additional data items to be collected.

Respondents who answered “yes” were asked one follow-up question:

Question 5a: Please provide details of each data item, a purpose for starting to collect it and how it would be used.

Table 5a shows additional data items by respondent sector along with the purpose they gave (if provided), our recommendation and justification.

Table 5a: Response to question 5a by sector

• Recommendation: see table 5a.
• Justification: see table 5a.

Question 6: Data items that are difficult to collect

Of the data items that we propose to continue collecting, are there any particular data items that are difficult to collect?

This question had “not applicable” as an option for respondents not involved in collecting FGM data. The 34 respondents who selected “not applicable” have been excluded from table 6.

Table 6: Response to question 6 by sector

• 74% did not think any of the data items that we propose to continue collecting are difficult to collect.

Respondents who answered “yes” were asked two follow-up questions:

Question 6a: Please select the data items that are difficult to collect.

Question 6b: For each data item selected in the previous question, please provide details of why this data item is difficult to collect.

Table 6a: Data items selected as difficult to collect by sector

• Data items “Fgm Type”, “Advised On Illegalities Of FGM”, “Advised On Health Implications Of FGM” and “Fgm Type4 Qualifier” were selected most frequently as difficult to collect.
• For these data items, the reasons given for collection difficulties included a lack of training and expertise in identifying FGM type, the time available during consultations for collecting the data items and patients being unwilling to share the information.
• Recommendation: continue with collecting the proposed items alongside a review of the training and guidance.
• Justification: feedback from the workshops for women affected by FGM was that they did not object to the collection of any specific data items but rather the ways in which questions are asked. This could be addressed through improving training and guidance.

Question 7: Barriers to collecting data

Are there any other barriers to collecting data for the FGM Enhanced Dataset?

This question had “not applicable” as an option for respondents not involved in collecting FGM data. The 29 respondents who selected “not applicable” have been excluded from table 7.

Table 7: Response to question 7 by sector

• 62% did not think there are any other barriers to collecting data for the FGM Enhanced Dataset.

Respondents who answered “yes” were asked one follow-up question:

Question 7a: Please provide details of these barriers.  

• The main barriers were consultation time, health systems, confidentially concerns, patients being unwilling to provide the information and language barriers.
• Recommendation: review training and guidance and investigate options for only collecting static questions once on the data collection system.
• Justification:
  • feedback from the workshops for women affected by FGM was around ways of communicating using respectful language, involving patients with decision making, and a need for patients to be provided with the context and purpose for the data being collected. It was agreed that this could be addressed through improved training and guidance.
  • concerns around lack of consultation time could be addressed by asking questions that will not change only once, i.e. static questions.

Question 8: Different types of data collection in different settings

Would you support 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 ensures a trauma informed approach to asking about FGM?

This question had “not applicable” as an option for respondents not involved in collecting FGM data. The 60 respondents who selected “not applicable” have been excluded from table 8.

Table 8: Response to question 8 by sector

• 86% would support different types of data collection in different settings to ensure the most appropriate information is collected.
• Across all sectors at least 50% of respondents would support this.

Respondents who answered “yes” or “no” were asked one follow-up question:

Question 8a: Please provide a reason.

• Respondents who answered “no” expressed concerns about data inconsistencies, the collection burden taking away from direct care activities and the need to improve current collection data quality before expanding to more settings.
• Recommendation:
  • investigate the option to only collect static questions once.
  • Investigate alternative options to collect aggregated returns and consult with the Royal College of General Practitioners (RCGP).
  • Pending a decision on alternative options for GPs, we will work with RCGP to develop interim guidance to support GPs in collecting the data. It will clarify that FGM ED data should only be recorded when FGM is discussed during routine care, not proactively asked for the purpose of data collection.
• Justification:
  • the proposal received the support of 86% of respondents.
  • concerns about the burden of the current collection could be addressed by an aggregated return or changes to the data collection system to only collect static questions once.
  • feedback from the workshops for women affected by FGM was that they do not object to the collection of data as it is seen as necessary for healthcare purposes. The issue is more to do with the way in which data are collected. This will be addressed through improving guidance on trauma informed care.

Question 9: Frequency of data quality reports

Are you happy with the proposal to reduce the frequency of data quality reports, that are sent to data providers, from quarterly to annual?

Table 9: Response to question 9 by sector

• 86% supported the proposed reduction of data quality reports from quarterly to annual.
• At least 50% of respondents from all sectors were happy with the proposal.

Respondents who answered “no” were asked one follow-up question:

Question 9a: Please provide a reason.

• The main reasons were that annual DQ reports could be more onerous for larger providers and that correcting older data would be more complex. Respondents also thought that quarterly DQ reports are useful to identify issues early to make improvements and were concerned that moving to annual DQ reports would reduce the profile of FGM amongst providers.
• Recommendation: accept the proposal.
• Justification:
  • the proposal received the support of 86% of respondents.
  • FGM data will still be published quarterly, and this will support data quality.

Question 10: Health registration forms

As a patient, would you mind being asked if you have been subjected to FGM every time you fill in a health registration form?

This question had “unsure” as an option with 41 respondents selecting this. These respondents have been excluded from table 10.

Table 10: Response to question 10 by sector

• 39% of respondents would not mind being asked if they had been subjected to FGM every time they filled in a health registration form. The majority of responses were from health partners which may impact the response to this question.

• This is the only question where most respondents (61%) did not support the proposal.

No follow up question was asked for this question.

• Recommendation: reject the proposal.
• Justification:
  • 61% of respondents did not support the proposal.
  • the proposal would add to the collection burden.
  • Feedback from the workshops for women affected by FGM was mostly negative.

Question 11: Follow up by trained professional

If asked on a health registration form if you had been subjected to FGM, would you expect a trained professional to follow this up with you?

Table 11: Response to question 11 by sector

• 80% would expect a health professional to follow this up with them.

No follow up question was asked for this question.

• Recommendation: reject this proposal.
• Justification: this links to question 10 which has also been rejected so this would not be relevant.

Question 12: Other comments

Do you have any other comments you would like to feed into the FGM review?

• 21 respondents (13%) had other comments which have been fed into the discussion as part of developing the response to the consultation outlined above.

Next steps

• The information standard (which establishes the mandatory requirement to collect data) and the information standards notice will be updated.
• The necessary changes will then be made to the IT systems to enable rollout of the amended dataset questionnaire to be implemented during 2026/27.
• A training and communication plan will be launched in advance of the amended dataset rollout. It will include live and recorded webinars and ‘how to videos’. These will provide information about the new dataset collection for both patient-facing staff and those entering the data. Additionally, the e-Learning for Healthcare FGM Module – which is currently being refreshed – will include information on the new dataset.

We would be grateful if you could complete the FGM consultation questions below to provide your views on the key 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.

Note: please choose “Not applicable” as a response for questions not related to you. For example, if you are not involved in collecting FGM data, please choose “Not applicable” for the questions around data collection.

Many thanks for your support in this work.

1. What sector do you work in? (if you work across more than one sector, please choose your main sector). (Health Partners/Royal Colleges/Third Sector Organisations/Government Partners/Member of the public/Member of the public who identifies as being from an FGM impacted community/Other)

2. Are you happy with the data items that we propose to stop collecting? A list of these data items, and the rationale for stopping collecting, is available here. (Yes/No)

If Q2 response is “No”…

1. 1. Follow-up question: Please select the data items that you want to continue collecting. (list provided showing all data items from table 1)
   2. Follow-up question: For each data item selected in the previous question, please briefly outline your concerns and provide a purpose for continuing to collect this data item. (free text)

3. Are you happy with the data items that we propose to continue collecting? A list of these data items, and the purpose for collecting, is available here. (Yes/No)

If Q3 response is “No”…

1. 1. Follow-up question: Please select the data items that you want to stop collecting. (list provided showing all data items from table 2)
   2. Follow-up question: For each data item selected in the previous question, please briefly outline your concerns and provide a reason for stopping collecting this data item. (free text)

4. Are you happy with the new data item that we propose to collect? Details of this data item is available here. (Yes/No)

If Q4 response is “No”…

1. 1. Follow-up question: Please provide a reason (free text)

5. Do you have any additional data items that you would like to be collected? (Yes/No)

If Q5 response is “Yes”…

1. Follow-up question: Please provide details of each data item, a purpose for starting to collect it and how it would be used. (free text)

6. Of the data items that we propose to continue collecting, are there any particular data items that are difficult to collect? (Yes/No/Not applicable)

If Q6 response is “Yes”…

1. 1. Follow-up question: Please select the data items that are difficult to collect. (list provided showing all data items from table 2)
   2. Follow-up question: For each data item selected in the previous question, please provide details of why this data item is difficult to collect. (free text)

7. Are there any other barriers to collecting data for the FGM Enhanced Dataset? (Yes/No/Not applicable)

If Q7 response is “Yes”…

1. 1. Follow-up question: Please provide details of these barriers. (free text)

8. Would you support 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 ensures a trauma informed approach to asking about FGM? (Yes/No/Not applicable)

If Q8 response is “Yes” or “No”…

1. 1. Follow-up question: Please provide a reason (free text)

9. Are you happy with the proposal to reduce the frequency of data quality reports, that are sent to data providers, from quarterly to annual? (Yes/No)

If Q9 response is “No”…

1. 1. Follow-up question: Please provide a reason (free text)

10. Would you mind being asked if you have been subjected to FGM every time you fill in a health registration form? (Yes/No/Unsure)

11. Would you expect a trained professional to follow up this with you? (Yes/No)

12. Do you have any other comments you would like to feed into the FGM review? (Yes/No)

If Q12 response is “Yes”…

1. 1. Follow-up question: Please provide your comments (free text)

13. Would you be happy for us to contact you if we need any further information on your comments? (Yes/No)

If Q13 response is “Yes”…

1. 1. Follow-up question: Please provide your email address (free text)

Message shown after submission: Many thanks for your help. Your views will inform changes to the FGM Enhanced Dataset.