'Be the Voice’ – involving minority communities in health research

UCD Ardmore House was the setting for an event to explore the challenges and barriers for ethnic minority communities getting involved in health research on Tuesday, 11 February.

Pictured (l-r) Elaine Quinn, UCD Conway Institute; Prof. Gayathri Devi, Duke University; Dr Arman Rahman and Prof. Amanda McCann, UCD School of Medicine; Anna Wedderburn, Systems Biology Ireland and Yvonne O’Meara, UCD School of Medicine. 

Twenty people living in Ireland but originally from Venezuela, Bangladesh, India, Libya, Bulgaria, Nigeria and Brazil took part in ‘Be the Voice of your Community in Health Research’.

Welcoming the participants, Dr Arman Rahman from UCD School of Medicine and Fellow, UCD Conway Institute spoke about initiatives to include diverse voices in research discussions equally and accessibly. Dr Rahman also introduced his international collaborator, Prof. Gayathri Devi from Duke University through an Irish Cancer Society cancer research networking award.

Dr Rahman has led the ‘Invisible Spectrum’ initiative in Precision Oncology Ireland with annual events since Science Week 2020 to specifically involve Bangladeshi and Arab Muslim communities.

Elaine Quinn, UCD Conway institute spoke about the ‘Cut from the Same Cloth’ art/science project with tapestry weaver, Lorna Donlan that has engaged 164 women and girls from minority communities led by Prof. Amanda McCann, UCD School of Medicine and Chair, ‘The Patient Voice in Cancer Research’.

Prof. Gayathri Devi gave a brief overview of the U.S. experience of developing a model to address cancer health disparities in underserved communities.

Yvonne O’Meara, Women's Cancer Survivorship Research Coordinator, UCD School of Medicine spoke about the online personalised resource [thisisGO.ie] for women and their families impacted by a gynaecological cancer diagnosis. The concept and materials were developed through public and patient involvement (PPI) in the initiative. Yvonne then facilitated a ‘fireside chat’ with three community members who spoke of their lived experience of health conditions or health inequities.     

Prof. Amanda McCann and Elaine Quinn co-facilitated roundtable discussions between community members and researchers from the Cancer Biology & Therapeutics laboratory (UCD Conway) to explore themes of health inequity and the challenges in being involved in PPI in research.

The outputs from the workshop will help create survey questions about health research and PPI awareness for ethnic minority communities.

The event was funded through a seed funding grant from UCD PPI Ignite Network and an Irish Cancer Society cancer research networking award to Dr Rahman (lead PI).