Mandatory submission of patient information about FGM: a pointless, damaging, discriminatory mess

Brenda Kelly and Charles Foster

Female Genital Mutilation (‘FGM’) is a term covering various procedures involving partial or total removal of the external female genitalia or other injury to the female genital organs for non-medical reasons (WHO, 2012). It can be associated with immediate and long-term physical and psychological health problems. FGM is prevalent in Africa, Middle East and South East Asia as well as within diaspora communities from these countries

The Government, keenly aware of the political capital in FGM, has come down hard. The Serious Crime Act 2015 makes it mandatory to report to the police cases of FGM in girls under the age of 18. While we have some issues with that requirement, it is at least concordant with the general law of child protection.

What is of more concern is the requirement, introduced by the cowardly device of a Ministerial Direction and after the most cursory consultation (in which the GMC and the RCOG hardly covered themselves in glory), by which healthcare professionals, from October 2015, are legally obliged to submit patient-identifiable information to the Department of Health (‘DOH’) on every female patient with FGM who presents for whatever reason, through the Enhanced Dataset Collection (EDC). The majority of these women will have undergone FGM in their country of origin prior to coming to the UK.

The DOH has given disturbingly weak reassurances that the information will not be transmitted to third parties (such as the police or the Crown Prosecution Service).

We can see no evidence that this constitutionally troubling data collection is likely to produce any benefit. But there is every reason to suppose that it will significantly damage the doctor-patient relationship and discourage women who have undergone FGM (and either because of that, or for unrelated reasons, need medical treatment) from seeking medical attention.1

This post, however, is concerned primarily with the compliance of the proposed procedures with the data protection legislation.

Patient consent is not required for the submission of the required information. That, of course, is intrinsically worrying. But we should not be worried, says the DOH, because a woman has a right to have her personal information removed from the Health and Social Care Information Centre (‘HSCIC’) database. We are not at all reassured by this. The woman has to appeal in writing to the DOH and submit extensive documentation as proof of identity. The task of providing such an objection may be insurmountable

The DOH has insisted that its procedures comply with the ‘fair processing’ requirement. We disagree.

The DOH agrees that: ‘All NHS organisations are bound by a range of responsibilities to maintain patient confidentiality and respect the wishes of patients. Under the Data Protection Act, this is called fair processing’.2

The term ‘data providers’, in the context of this EDC, refers to healthcare professionals seeing the woman or girl who has FGM who would be recording the information from the clinical consultation.

The DOH/HSCIC says that3:

– ‘All data providers must comply with fair processing requirement of DPA 1998’.

– To meet these requirements, ‘data providers must make information and guidance available to patients to inform them that their data will be used for secondary uses purposes’. (section 6, p.48)

– Explicit consent is not required but [the data provider] ‘must inform each woman or girl as to how and what will happen to information being recorded and further to this, where an objection to this is made, each organisation must ensure it understands the fair processing procedures outlining where a woman can contact to make an objection to this information being recorded and sent to the HSCIC’.

– ‘The route to be followed in making an objection can be seen on a website:

In the more recently issued guidance (September 2015) it is stated that clinicians, in order to meet the fair processing requirements, should give the patient the FGM leaflet ‘More information about FGM which is available in 11 languages. Further, it is stated that giving the patient this leaflet fully meets the requirement for ‘fair processing’ and that this action alone is sufficient. The DOH state that the clinician is not required to discuss the FGM dataset in detail.

The DOH now states that there are two stages at which a patient, having received fair processing notification, can raise an objection:

Objection at time of care delivery

The process underlying this route of objection is not clearly stated in the new guidance. In particular it is not clear what measures will be in place to prevent automatic submission in case of electronic patient records. Enquiries to the DOH from healthcare professionals seeking clarification have gone unanswered.

Objection after submission of data to HSCIC

In this situation the patient must submit a written objection, supported by document proving her identity (birth certificate, passport, marriage certificate, or driving license) and address (utility bill, credit card statement, bank statement, benefit book or pension book)

We have a number of concerns about this process.

Concern 1: Does the act of giving the leaflet fully comply with the FP requirements of the DPA?

Is it not questionable as to whether the mere act of giving a leaflet to the woman (without also ensuring that she can read it, assimilate the information within it and additionally understand the sentinel paragraph placed on the last page which relates to her information) fully meets the requirements for fair processing under the DPA?

Concern 2: Does the leaflet contain sufficient information to comply with the Fair Processing requirements of the DPA?

The leaflet states under Section titled Collecting and using information from patients with FGM: ‘Information about FGM is being collected by the Health and Social Care Information Centre (HSCIC). To find out more about the information we are collecting, why and how we will use it or to be object to your information being used in this way, please go to www.hscic.gov.uk/patientconf for further details’.

This paragraph fails to state explicitly that patient-identifiable information and confidential details about her FGM and her family shared with her healthcare professional are being collected by HSCIC.

The website to which the woman is directed contains on the opening page/in pages directly linked to this front page no information indicating why the information is being collected and how it will be used. The FGM Dataset is missing from the list of different datasets currently active under HSCIC (http://www.hscic.gov.uk/article/4963/What-information-we-collect ) which is one of the links from the www.hscic.gov.uk/patientconf front page.

If one enters the term ‘FGM’ into the search engine on the website to which the woman is directed, it takes her to a wholly irrelevant list of publications relating to experimental statistics.

Although the leaflet ‘More information about FGM’ is available in 11 languages, the HSCIC website is in English only. Therefore even if a patient wanted to find out more information, she may never discover that it is available.

The overwhelming majority of women in the UK with FGM do not speak English as a first language. Moreover, a significant number are not literate in their own language. In addition, there is a further issue: that of health literacy which is recognised to be lower in migrant groups.5 Health literacy refers to a person’s knowledge, motivation and ability to access, understand, appraise and apply health information in order to make judgements. This should mean that the DOH is particularly explicit about the use being made of the information and the control that women can have over the information. In fact the DOH is particularly obscure.

Concern 3: Is the process of raising an objection clear and accessible to women with FGM who do not speak English as a first language, who account for the majority of women whose confidential information is being submitted? And could a migrant woman, even if she were to understand the route to objection and wish to object, provide the necessary supporting documentation to do so?

Exercising the right to object to use of confidential data is in part reliant on the patients whose personal information being collected knowing that such data collection is being undertaken. Given the obscure way in which information about the data collection is presented, it is likely that many women will not make an objection when, had the issues been fairly presented to them, they would have done.

The right to object to data being used requires the woman to appeal in writing (in English) to the DOH and submit extensive documentation as proof of identity and address (e.g. copy of utility bill, bank statement). The task of providing such an objection may be insurmountable, particularly for a non-English speaker and/or asylum-seekers: it is therefore discriminatory. Article 14 of the ECHR is, in our view, plainly engaged. Article 14 is, of course, a parasitic right: it only applies to the ability of a subject to enjoy the rights given by another Article. The relevant primary Article here is Article 8.

The DOH has put many obstacles in the way of a would-be objector. That means that few objections are likely to be made. We entirely expect the DOH to say, a year or so hence, that since there have been few challenges, there is nothing wrong with the provisions.

The reporting provisions are woefully misconceived. They will cause a haemorrhage of trust from the relationship that potentially traumatised women have with their clinicians. They impose a heavy burden of explanation on already harassed clinicians. We call for their annulment. But if they are to survive, the very least that should be done is that the women should know the rights that they have in respect of their data, and should have the data protection given to the native English speaking majority.

References

  1. ‘Mandatory submission of patient information to third parties: FGM now: what next?’ Bewley et al. BMJ Rapid Responses, 18 March 2015

http://www.bmj.com/content/350/bmj.h1467/rr

  1. http://www.hscic.gov.uk/media/18628/2026122014statement/pdf/2026122014statement.pdf
  2. http://www.hscic.gov.uk/media/16781/2026122014spec/pdf/2026122014spec.pdf
  3. Wångdahl J, Lytsy P, Mårtensson L, Westerling R. Health literacy among refugees in Sweden – a cross-sectional study.

BMC Public Health. 2014 Oct 3;14:1030. doi: 10.1186/1471-2458-14-1030.

 

Dr Brenda Kelly is a consultant obstetrician at the John Radcliffe Hospital and is Director of the Oxford Rose Clinic, a multidisciplinary specialist clinic for women and girls with FGM.

 

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2 Responses to Mandatory submission of patient information about FGM: a pointless, damaging, discriminatory mess

  • Martin Bourne the says:

    Any woman with the ability to understand her right to opt out (of having her personal details passed to the DOH) is hardly likely to exercise the right if the prescribed process requires her to supply documents which contain personal details, further to those already supplied by her GP, including her passport number.

  • crork service says:

    r5OxNz Really informative article.

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