Disability Data Collection in IVF (in vitro fertilisation) v0.1
Research type
Research Study
Full title
Exploring the processes and practices of disability data collection in IVF services in NHS Scotland: a mixed methods study.
IRAS ID
325088
Contact name
Joanne Leitch
Contact email
Sponsor organisation
University of Stirling
Duration of Study in the UK
3 years, 5 months, 30 days
Research summary
This study aims to gain insight into the practices and processes of disability data collection in people having IVF treatment within NHS Scotland services to improve disability data quality, strengthen data collection and monitoring, and improve 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. Without effective and accurate disability data collection, it is not possible to monitor access to IVF for people with disability, identify their specific healthcare needs and barriers to treatment, monitor health inequalities, or prevent disability discrimination. The study will take place in three phases over 36 months, using a mixed methods design. The first phase will analyse administrative IVF disability and treatment data held on a UK database to understand the data quality, calculate disability prevalence in IVF patients, and measure IVF treatment outcomes for people with disability. The second phase will involve exploring the findings of this analysis with 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. People with lived experience will be identified through a study poster shared by third-sector IVF patient-focused charities and invited to participate in a 60-minute qualitative interview. Staff participants will be identified through a study invitation email shared with clinical leads of IVF services in NHS Scotland and invited to participate in a 90-minute focus group. Recruitment will be through self-referral only and the researcher will obtain informed consent. The third phase will involve integrating the findings of the first two phases to provide a more in-depth explanation of the findings and to answer the research questions.
REC name
London - South East Research Ethics Committee
REC reference
24/PR/1617
Date of REC Opinion
30 Dec 2024
REC opinion
Favourable Opinion