Community Engagement: Now is the time
The AACR Virtual conference on the Science of Cancer Health Disparities (held between 2nd-4th October 2020) discussed how disparities in cancer incidence and outcome arise from a combination of socioeconomic circumstances, socio-environmental behaviours and lifestyle choices, structural inequalities and underlying genetic factors.
Whilst the bench to bedside model for translational research describes the emphasis on improving clinical outcomes; a refreshing approach of the bench with bedside would enable a greater appreciation of the human impact of disease and the opportunity for us all to expand our understanding of the experiences and voices of those impacted by our research.
For me, there were two key realisations from this conference:
- 90% of the cell lines and models we use for research are derived from European patients – we need to generate more representative models and better understand the underlying genomic signatures of diverse populations as we strive for personalised medicine.
- Participants in clinical trials are often not representative of the populations affected by the disease under study – we need to engage our communities and facilitate change at all levels to encourage minority or marginalised groups to be recruited to and participate in trials.
Simply put, patient and community engagement facilitates diverse participation. Diversity contributes to improved outcomes and can help to achieve equity.
So how do we engage broader communities?
Over the past year as part of my wider role as Social Responsibility lead for the Division of Cancer Sciences, I have had the absolute pleasure of working with the Black Asian and Minority Ethnic Research Advisory Group (BRAG), facilitated by Tracy Grey at VOCAL. This group of passionate, motivated and articulate individuals are key to helping shape our ongoing community engagement projects. More than that, we are working together to draw up a strategic partnership with equal voices to improve the way we interact with our diverse communities in Greater Manchester.
We need groups like BRAG to ensure we are playing our part in addressing social injustice: to help educate researchers and clinicians about the factors which lead to health inequalities and better understand the disparities in the cancer continuum. I have learned so much already about intersectionality, communication and the importance of trust building. With their help and guidance we can improve the language we use to be more inclusive, our knowledge greater and our impact broader.
Groups like BRAG are essential. Reach out, connect and include. But these relationships take time. Don’t wait until you need samples for your experiment. If you’re interested in engaging patients and the public with your research visit VOCAL.
If you are already doing so, I would love to hear about it: Suzanne.Johnson@manchester.ac.uk