Ethnically diverse communities and their priorities for cancer research.

Abstract

e18602 Background: Ethnic minorities in the UK tend to have poorer access to healthcare, outcomes and experiences than the majority population. They are often underrepresented in health research. Experiencing disparities compounded by the lack of involvement in research widens the inequalities gap. Methods: Targeted community engagement was implemented in the highest areas of deprivation in the South West. The project team designed a series of questions and data was collected during outreach health checks and community events by members of the team based in the community. Information was collected from individuals and from groups. Results: Forty people, from culturally and linguistically diverse communities participated. We sought help from interpreters to ensure inclusivity and information was gathered in a cultural sensitive way. This was especially important due to the sensitivity in this topic area. Demographic information was collected from those that participated. The majority were women (n = 33), men (n = 7). In terms of ethnicity the majority described themselves as Black African/Caribbean (n = 31), Arab (n = 9) and Asian (n = 3). The age range was 25 - 64 years. Twelve people identified that their actual age was different to their recorded age on the NHS system. Fourteen people had been in the UK for less than 5 years and included those identifying themselves as refugees and asylum seekers. We conducted content analysis to identify and categorise the cancer research needs identified. Key themes identified included: Easier access to screening programmes; earlier diagnosis and how to initiate onward referral; research into cancer prevention and a more holistic approach to cancer care. Only one patient had clinical trials discussed. Conclusions: Community engagement offers the opportunity to identify cancer research priorities and discuss access to cancer prevention, cancer screening programmes, therapies and clinical trials. Through actively listening to our communities and the voices seldom heard about their experience of health and cancer care, we raise awareness and provide ongoing education to health care teams, on the delivery of care that is culturally sensitive, inclusive and more tailored to an individual. Increasing the diversity of the workforce may increase representation and greater advocacy of the communities. Engaging patients more in their own cancer care and decision-making may empower them to be more involved in their health. Our findings suggest that community engagement with people from diverse communities identify areas for improvement in their cancer care and experience. This includes how we might better engage with people from diverse backgrounds on clinical trials. Addressing the priorities identified from these communities is a first step in addressing the existing inequalities. Organisations need to actively engage, listen to and empower the communities that we serve.