Collecting the data on FGM will do more harm than good
Dr Helen Salisbury and Dr Sharon Dixon argue that the new FGM enhanced data set is unethical and impractical
Imagine you are plucking up courage to talk to your GP about something very traumatic from your childhood that has had an enduring impact throughout your life. Then you find out that your GP will share that information with the Government. As a patient, would you talk? As a doctor, would you ask? The FGM enhanced dataset will put doctors and patients in this difficult situation.
This requirement to share information with a Government department is likely to stop disclosure of FGM to health professionals and deny women the opportunity to seek support
How many GPs are aware that from 1 October 2015 we must by law submit information, including name, date of birth, NHS number and postcode of all patients who have been subjected to FGM at any time to the HSCIC? The stated aim is to improve care and support prevention but what will be the unintended consequences? The Department of Health tells us that consent is not required but ‘fair processing’ requirements are met by giving your patient a leaflet, ‘More information about FGM’ (available in 11 languages).
However, in reality, clinicians will have to answer questions, which we don’t currently have answers to - ‘Why do you want this data? Who will see it? What if I say no?’ We understand that patients can only object to the onward sharing of the data by applying in writing with proof of identity, if they can follow the instructions on an English language website.
In the guidance updated in September, there is a new option that if a patient raises an objection before submission ‘the local organisation must consider this objection within their own processes, and ensure they record within the healthcare record the outcome of this decision (i.e. whether or not to disclose information to HSCIC)’. Despite this welcome change, we are still obliged to have these difficult conversations to the detriment of our relationships with patients.
Going back to the consultation, when do you inform your patient that you will be sharing her data? Before you ask her to tell her difficult story? If you do, she’ll probably stop right there. Or do you wait until after she has disclosed this information? How many of us will feel comfortable doing that? And will she be back for the follow up care she so badly needs? Most of us will just stop asking to avoid this betrayal.
To be clear, this is not about new cases of FGM in under 18s which are an urgent child protection issue and must be reported to the police under the Serious Crime Act 2015. This is about historic events, often in other countries.
We are passionately opposed to FGM which has ruined many women’s lives and is a threat to many girls in the UK today. But this requirement to share information with a Government department is likely to stop disclosure of FGM to health professionals and deny women the opportunity to seek support and treatment. Far from helping safeguard at risk girls it will drive this practice back underground.
We cannot think of any other group whose data is being collected without consent in this way and we believe this breach of confidentiality will seriously damage the doctor-patient relationship. These are vulnerable patients who have been victims of significant trauma and they deserve our care and protection. We urge you to look at the dataset requirements (the clinical audit platform tool is long and complicated) and consider how you will manage this situation in in your practice. Are local processes in place to allow objections at the point of care? How to you feel about adding this conversation to an already difficult consultation?
Dr Helen Salisbury is a GP and Communication Skills Course lead in Oxford.
Dr Sharon Dixon is a GP in Oxford and local FGM lead.