The ReIMAGINE Consortium
The ReIMAGINE Consortium aims to, for the first time, combine biomarkers (blood, urine and tissue) with state-of-the-art imaging to predict which prostate cancers are likely to progress over time and which will not.
Patient and Public Involvement (PPI) Activity
We have been working with patients and the public from initiation of the project to ensure that the research is relevant to men and their families. We had several meetings to try to ensure that the ethnic diversity of London was represented. The meetings were scheduled alternatively during the daytime and in the evening. This was to allow a wide range of patients and members of the public to engage.
The Response
However, despite our efforts only 0 to 13% of our volunteers were from Black, Asian and minority ethnic communities. This was even with the risk of being diagnosed with prostate cancer being higher for black men. One in eight men will be diagnosed with prostate cancer in their lifetime. This rises to one in four for black men.
The ReIMAGINE Patient and Public Involvement Sub-Committee
Once funded, we appointed a Patient and Public Involvement (PPI) Coordinator who worked closely with the patient representative to recruit a diverse PPI Sub-Committee: three white men and one black man with prostate cancer, as well as one black woman whose father died of prostate cancer.
The appointment of a PPI co-ordinator and a patient chair of the PPI sub-committee has led to work outside the study remit. Particularly so in the establishment of a Black, Asian and Minority Ethnic PPI Cancer Research Group, with a subgroup for prostate cancer.
PPI Cancer Group for people of diverse backgrounds
We have been able to address the disproportionate under-representation of the Black, Asian, and minority ethnic communities in research through the establishment of this specialist PPI group.
We provide a platform for researchers to access this under-represented population of patients and members of the public who wish to be involved with clinical research. For instance, researchers from Milan who were putting together a proposal for the World Cancer Research Fund requested ethnic representation for a focus group, which we provided. In addition, colleagues from the Royal Marsden expressed their appreciation to us for providing black representation in their focus group with prostate cancer patients, ‘He was great, fabulous contribution, so worthwhile.’
Mark Minott, an active member of our group specialist group states, ‘I joined the group because of my experience with prostate cancer. More importantly, joining the group provides an opportunity to use my research skills coupled with my cultural background to help influence research that benefits the BAME community’.
Join us
The ReIMAGINE Consortium would like to invite participants to join this specialist interest group in order to inform research and ultimately improve cancer outcomes and reduce health inequalities. https://www.reimagine-pca.org/.
