Barriers to clinical cancer research participation: moving from inclusion to engagement when considering European migrants' recruitment

参与临床癌症研究的障碍:在考虑招募欧洲移民时,应从包容转向参与

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Abstract

BACKGROUND: Participation in clinical cancer research trials should diversely reflect the intersectionality characteristics of the general population for results to be representative and applicable. European migrant populations residing in the United Kingdom (UK) are a group whose participation in clinical research warrants further exploration from a community and clinical perspective. This study aimed to explore the barriers and facilitators of individuals who have migrated to the UK from an EU8 or EU2 (EU8/2) country to participating in clinical cancer research trials to update clinical and research agendas for optimising inclusive engagement strategies. METHODS: Perspectives of migrant individuals and of clinical research staff were explored to identify barriers and opportunities for optimising engagement. Five focus groups with clinical research staff at four hospitals across the East Midlands and three online focus groups with individuals who had migrated to the UK from Poland, Latvia and Romania were conducted. Data was analysed using template analysis. RESULTS: Twenty-two clinical research staff and 17 individuals from EU8/2 countries participated in the study. Three key themes and related subthemes were identified: (1) Ambivalence, misunderstanding and fear shape cancer research perceptions (1.1. a lack of familiarity with cancer research practices; 1.2. Cancer fear may hinder participation); (2) Structural barriers and gaps in cultural competency; and (3) Building trust through community engaged research (3.1.Co-researching with communities; 3.2. Incentivising and legitimising research). DISCUSSION: Many migrant participants were unfamiliar with UK-based research practices, and it was suggested that fatalist attitudes towards a cancer diagnosis and mistrust of research generally created apprehension and defensiveness when hearing about clinical cancer research in migrant communities. Migrant individuals and staff endorsed research design strategies which engage community champions (including clinicians); narrate positive stories of cancer research participation; and consider language accessibility and comprehension as key elements of engagement-focused research design.

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