Disability data collection in IVF

Lay summary

People with disability are known to be vulnerable to experiencing health inequalities, find it difficult to access healthcare, and have poorer health outcomes when compared to those without disability. The aim of this project is to understand how data on disability is collected in people having IVF treatment to improve monitoring of this characteristic and care in this population. This study is important because there is no evidence on the quality of disability data in IVF services or studies investigating IVF care of people with disability.

The project will take place in three phases using quantitative and qualitative methods. The first phase will analyse demographic, treatment and outcome data from the UK Human Fertilisation and Embryology Authority (HFEA) Register from 2013 to 2023 to understand disclosure of disability, calculate its prevalence in IVF patients and measure IVF treatment outcomes for people with a disability. The second phase will involve interviewing people with lived experience of IVF services in NHS Scotland who self-identify as having disability and staff who work in NHS Scotland who are experienced in collecting disability data in IVF. The third phase will analyse the findings of the first two phases to explain current practices around disability data collection.

Public benefit statement

This research is in the interests of improving patient care because it addresses a gap in knowledge about collection of disability data in IVF and the access and treatment outcomes of people recorded as having a disability. Improving these practices will allow effective monitoring of inequalities, identify specific healthcare needs and barriers to treatment, and help prevent disability discrimination.