The government has issued new legislation to enable a study that follows up 9,000 children and young people who previously received care for gender related distress on the NHS. The so-called “data linkage study”, looking at the health outcomes of those who were seen at the now-closed Tavistock Gender Identity Development Service (Gids), was meant to be completed as part of the Cass Review. The four-year review of NHS children’s gender services, led by Dr Hilary Cass, was unable to finish the study because of a lack of co-operation from adult gender clinics.
The study aimed to link data held by Gids on the individuals as children with data on those same individuals as adults. The adult data is held by the NHS generally, and by NHS adult gender clinics for those who sought further medical treatment. Despite all necessary approvals being in place, the NHS adult gender services refused to cooperate with the data sharing. Speaking to the New Statesman in April 2024, Cass said the behaviour of the clinics was “mystifying” to her. “Particularly when you would expect that they would be curious about outcomes for the patient cohort going through, and if they are confident in the management approach, they would want to be able to demonstrate that.” In January 2024, NHS England took on “responsibility for realising the ambitions of the study”, acknowledging that failing to carry it out would be a “missed opportunity in gathering high quality evidence”.
The new legislation, announced in parliament today, will come into effect on 20 March, updating the previous law put in place by the then Conservative government. It allows the adult gender clinics and other relevant bodies to lawfully disclose data that might otherwise be protected under the Gender Recognition Act 2004, for the sole purpose of this study. The Health Secretary, Wes Streeting, has explained that the government believes the original legislation “needs to be updated to sufficiently protect those who will now be sharing information for the purposes of the study.” The new order also reflects the fact that NHS England is now delivering the research and updates the list of organisations contributing to the study.
“The study requires no active patient participation and instead relies on an analysis of information already held within health records and other nationally held databases,” Streeting explained. Instead, it “aims to learn more about the needs of individuals referred to Gids, their healthcare experience, and associations identifiable in the data which may tell us more about the intermediate outcomes for this cohort.”
The data linkage study is entirely separate to the proposed “Pathways” trial of puberty blockers, which was paused on Friday 20 February following safety and ethical concerns raised by the medicines regulator. The government says the new order represents its commitment to implement the recommendations of the Cass Review in full.
The data linkage study is not ready to begin, however, and is awaiting the necessary research and ethics approvals. Once these are received, the finalised protocol which guides the conduct of the study will be made public. While the new does not not compel the adult gender clinics and other to cooperate, Streeting said it is his “clear expectation that all relevant organisations will now provide the data required to complete this study”.
A Department of Health Social Care spokesperson said: “medical care must always be based on solid evidence and children’s safety must come first. Analysing existing data to better understand the needs, experiences and outcomes of people who had been referred to previous child gender services – but which does not involve new treatment or trials – will help to inform future decisions on gender care.”
[Further reading: Inside the decision to pause the puberty blocker trial]
Content from our partners
Related
Join the debate
Subscribe here to comment