Culturally And Linguistically Diverse Ethics and Research resources

(The CALDER pilot study)

Clinical research plays an important role in improving outcomes for older patients, as well as providing direct benefits to participants. Participation requires patients to provide their informed consent, acknowledging they have understood the ethical dimensions of their involvement. However, research information is often presented as highly complex written documents.

Large sections of our community are not able to participate in clinical research due to cultural, linguistic, and literacy barriers. This also poses scientific challenges as trial data are not representative of the target populations. To address this problem we propose to identify the barriers to, and enablers for, older migrants' participation in clinical research from patient, family, research and regulatory perspectives.

We will explore the feasibility of developing a simple, robust, cost effective and accessible mHealth-based method of delivering culturally and linguistically appropriate research information to patients and their families, including novel technology-enabled informed consent processes.

Team

Funding

IBES Seed Funding 2014

Outcomes

Research paper Culturally and linguistically diverse populations in medical research: perceptions and experiences of older Italians, their families, ethics administrators and researchers published in the Journal of Public Health, vol.5, no.1 (2016), pp.43-51.