Department of Health (DOH) FGM Information Standards
All healthcare professionals should be aware that the UK Department of Health's FGM Prevention Programme has implemented two information standards to help prevent and end FGM:
- FGM Enhanced Dataset
- FGM Information Sharing (FGM-IS)
What is the FGM Enhanced Dataset?
All care providers must regularly submit FGM data quarterly to NHS Digital, which collects information on behalf of the Department of Health. This FGM Enhanced Dataset, implemented in 2015, requires NHS organisations to gather and share detailed data about FGM within their patient population. Data has to be submitted quarterly to the Health and Social Care Information Centre (HSCIC).
What are its aims?
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Which organisations are submitting data?
The FGM Enhanced Dataset collection applies to the following NHS organisations in England:
- NHS acute trusts (Foundation and non-Foundation)
- Mental health trusts (Foundation and non-Foundation)
- General practices (GP surgeries)
Genito-Urinary and Sexual Health Medicine clinics are not specifically included in the dataset collection. However, they still have a legal obligation to appropriately share information with their safeguarding teams regarding cases of FGM.
What information is collected?
Personal confidential data: The individual's name, date of birth, NHS number, and country of origin.
FGM information: Details such as the type of FGM, the country where it was carried out, and any family history of FGM. Information routinely discussed during patient consultations: Information that is typically discussed between the patient and the healthcare professional as part of the standard delivery of care.
Information routinely included in the patient's healthcare record: Relevant information that is routinely recorded in the patient's healthcare record.
The personal confidential data is used for:
- Data validation
- Ensuring data quality
Data for the FGM Enhanced Dataset is collected through the NHS Digital Clinical Audit Platform (CAP) and submitted online. The CAP is designed to be user-friendly and intuitive, requiring minimal training to navigate and use effectively. To access the CAP for submitting FGM data, NHS organisations and new users must register by completing the FGM Enhanced Dataset CAP user registration form. This registration process ensures that authorized users have appropriate access to the platform for secure and accurate data submission.
Legalities
The Department of Health has commissioned the data collection and has established a legal basis for collecting patient confidential data without explicit patient consent. As a result, GPs and other healthcare providers have a legal obligation to provide NHS Digital with the required information as part of the data collection process. The FGM Enhanced Dataset Information Standard only applies to services commissioned by NHS England.
What to tell the patient?
- Explanation of data submission: Let the patient know that their information will be submitted as part of the FGM data collection process.
- Purpose of non-anonymisation: Explain that their data will be submitted without anonymization to prevent duplication and ensure accurate reporting.
- Confidentiality and privacy: Assure the patient that all personal identifiable data will not be made public and will be anonymized in final published reports. Emphasize that their privacy and confidentiality are protected.
Patients' Right to Object
Patients have the right to object to their identifiable health information being ‘personal confidential data’ being collected and submitted to NHS Digital. There are two ways to do this:
- At your GP surgery or other healthcare provider: Inform your doctor or healthcare professional that you wish to object to sharing your data. They will follow their internal procedures to record your objection in your medical record and determine whether your information will be sent to NHS Digital.
- Contact NHS Digital directly: Even if you didn't object at the initial point, you can still choose to do so later. Simply email enquiries@nhsdigital.nhs.uk and state your objection. NHS Digital will then automatically stop processing your data and remove it from any future publications. This is a policy decision made by the government and goes beyond the minimum legal requirements.
Asking More Questions
It is important to clarify that the data collection requirement does not require healthcare professionals to ask any additional questions beyond what is beyond what is standard practice for their care. The focus remains on providing high-quality patient treatment, and this requirement simply involves the secure collection of existing patient information for the purpose of improving overall healthcare services.
Challenges & Considerations
Safeguarding victims of FGM while effectively collecting data is a complex challenge. Professionals must balance protecting victims with their duty of care, navigating issues of fear, stigma, and mistrust. Openness, honesty, and a victim-cantered approach are essential in building trust and encouraging disclosure. While challenges persist, prioritizing the well-being of victims is paramount, regardless of cultural or immigration considerations. Continued support and care for survivors are crucial following any intervention.
https://digital.nhs.uk/data-and-information/clinical-audits-and-registries/female-genital-mutilation-datasets