Recruitment of ethnic minorities into cancer clinical trials: experience from the front lines

Abstract

Throughout the world there are problems recruiting ethnic minority patients into cancer clinical trials. A major barrier to trial entry may be distrust of research and the medical system. This may be compounded by the regulatory framework governing research with an emphasis on written consent, closed questions and consent documentation, as well as fiscal issues. The Leicester UK experience is that trial accrual is better if British South Asian patients are approached by a senior doctor rather than someone of perceived lesser hierarchical status and a greater partnership between the hospital and General Practitioner may increase trial participation of this particular ethnic minority. In Los Angeles, USA, trial recruitment was improved by a greater utilisation of Hispanic staff and a Spanish language-based education programme. Involvement of community leaders is essential. While adhering to national, legal and ethnical standards, information sheets and consent, it helps if forms can be tailored towards the local ethnic minority population. Written translations are often of limited value in the recruitment of patients with no or limited knowledge of English. In some cultural settings, tape-recorded verbal consent (following approval presentations) may be an acceptable substitute for written consent, and appropriate legislative changes should be considered to facilitate this option. Approaches should be tailored to specific minority populations, taking consideration of their unique characteristics and with input from their community leadership.

Barriers to Participation in a Randomized Controlled Trial of Qigong Exercises Amongst Cancer Survivors: Lessons Learnt

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I never knew that! Why do people from Black and Asian Minority Ethnic groups in Leicester access hospice services less than other groups? A discussion with community groups

“…Furthermore, there may be no direct equivalent of technical words. For instance, there is no word for cancer in Hindi and Gujarati and no acceptable term for breast cancer (Symonds et al, 2012). Equally, the words 'palliative care' and 'terminal care' do not translate directly into most non-European languages.…”

Challenges associated with recruiting multigenerational, multicultural families into a randomised controlled trial: Balancing feasibility with validity

“…However, recommendations are lacking for optimal recruitment from different ethnic minority groups in Australia, as well as for the recruitment of multi-generational family units from different ethnic backgrounds into the same trial. Moreover, despite the growing focus on the challenges associated with recruitment from ethnic minority groups, under-representation remains a problem [15,16,31].…”