Invisible spectrum: a model for minority community public engagement in cancer research.

BACKGROUND

Ethnic minority communities are often recognised as experiencing decreased accessibility to vital medical services as well as increased barriers to participation in research studies. These issues stem from a variety of social, cultural and economic factors, all of which must be taken into consideration when designing engagement initiatives for a particular community. Invisible Spectrum is an annual engagement initiative which seeks to promote effective communication and outreach to often-overlooked ethnic minority communities within Ireland, primarily those of Bangladeshi origin. The programme was developed in response to the traditionally low levels of engagement with healthcare services observed within these communities and seeks to empower communities in their own healthcare decision making.

METHODS

This study reports a programme of community participation activity with an embedded empirical research component based on participatory action research. The team included researchers and leaders within the Bangladeshi and Arabic Muslim communities in Ireland. Over the course of four years, feedback polls, pre- and post-event surveys and in-depth interviews gathered the views and recommendations of attendees.

RESULTS

We held 4 annual events as part of the Invisible Spectrum programme, from 2019 to 2023. Feedback we collected from participants consistently demonstrated high levels of satisfaction within the target communities while quantitative survey data also indicated improvements in key areas such as recognition of potential cancer symptoms and greater awareness of available screening services.

CONCLUSION

There is a significant need to continually promote patient involvement and minority inclusion in healthcare and research initiatives. In line with this goal and after 4 successful years of running the Invisible Spectrum programme, we have developed a set of recommendations and guidelines for the successful development and organisation of minority community engagement initiatives. It is our hope that the Invisible Spectrum programme could be used as a model for future endeavours of a similar nature.