Barriers to research participation, version 1
Research type
Research Study
Full title
Exploring the challenges faced by Eastern European ethnicity individuals to taking part in cancer research studies
IRAS ID
318809
Contact name
Esther Moss
Contact email
Sponsor organisation
The university of Leicester
Duration of Study in the UK
0 years, 5 months, 31 days
Research summary
Research Summary
Approximately 5% of the current United Kingdom (UK) and in the East Midlands 255,000 (+/- 32,000) of the population are EU-born (5.3%). It has been found that EE ethnicity individuals may experience additional barriers (e.g., cultural, language) to participating in research, including clinical trials. An example of this is engagement with cervical cancer screening, where it has been found that EE ethnicity individuals are less likely to engage, which seems to translate to overrepresentation of EE born women in CC cases (e.g., 28.2% of CC cases in North-West London). Distrust of the English health care system and a lack of information at registration with a GP have been reported as reasons for EE-born women not participating in the UK screening programme. Thus, greater efforts to promote inclusivity in research, particularly in health promotion and lifestyle interventions after cancer, is needed to increase representation of EE individuals and to improve services. Therefore, this research will aim to explore the challenges faced by EE ethnicity individuals to taking part in research studies, with the aim of developing best practice guidelines for engaging this population.
A three-fold qualitative methodological approach will be used to answer the aims of this research. Firstly, primary/secondary care healthcare professionals from across the East Midlands will be invited to take part in a multi-disciplinary workshop to explore how best to engage EE ethnicity individuals in cancer research studies. Secondly, focus group interviews with EE ethnicity individuals will explore knowledge and assumptions associated with cancer research and facilitators and barriers to research participation in the EE community. Thirdly, to build on the research already conducted in cervical cancer, interview with EE born cervical cancer survivors will explore their views on research participation after cancer treatment, with a focus on physical activity interventions.Summary of Results
In total, 39 individuals participated (17 individuals from EU8/EU2 countries and 22 clinical research staff). Analysis resulted in an altered template to describe the experiences of both migrant citizens and clinical research staff, including: 1) Attitudes towards cancer research (Navigating the benefits of research and its historical legacies); 2) Barriers to effective engagement (Perceptions of cancer and health management; Misalignment between structural research practices and cultural competency; and Feeling unsafe); and 3) Facilitators (Taking a community approach from the start; considering the incentives of participating in research; multidisciplinary approaches to research promotion. Whilst migrant citizens recognise the benefits of certain types of research, they spoke about historical legacies associated with clinical trial participation which promote narratives of deceit and manipulation. Negative experiences and attitudes towards the National Health Service and fatalistic views of a cancer diagnosis also serve to limit migrant citizen’s engagement with healthcare related research. A key way to tackle these barriers include taking a community-based approach to research during the design stage to enhance the tailoring of language and terminology alongside interventions which aim to share positive and accurate stories about research trial participation within communities.REC name
Yorkshire & The Humber - Sheffield Research Ethics Committee
REC reference
22/YH/0224
Date of REC Opinion
14 Oct 2022
REC opinion
Further Information Favourable Opinion