{"id":2543,"date":"2026-11-06T10:33:02","date_gmt":"2026-11-06T10:33:02","guid":{"rendered":"https:\/\/sites.exeter.ac.uk\/apex\/?p=2543"},"modified":"2026-11-06T10:33:04","modified_gmt":"2026-11-06T10:33:04","slug":"conversations-with-the-caribbean-community-about-cancer-listening-first-by-lucy-kirkland","status":"publish","type":"post","link":"https:\/\/sites.exeter.ac.uk\/apex\/2026\/11\/06\/conversations-with-the-caribbean-community-about-cancer-listening-first-by-lucy-kirkland\/","title":{"rendered":"Conversations with the Caribbean community about cancer: Listening first, by Lucy Kirkland"},"content":{"rendered":"\n

On 9 July 2026, researchers from the Cancer team and community leaders hosted Conversations with the Caribbean Community about Cancer<\/em> at Exeter Community Centre. Rather than presenting research findings or recruiting people to a study, the purpose of the afternoon was much simpler: to listen.<\/p>\n\n\n\n

Researchers Lucy Kirkland, Tanimola Martins, Mel Barlow and Callum Webb, alongside community leaders Faye and Dave, were joined by seven members of Exeter\u2019s Caribbean community for an informal conversation about cancer, primary care and experiences of healthcare.<\/p>\n\n\n\n

We gathered in one of the community centre\u2019s kitchen rooms, cooling down from the July heat with glasses of ice-cold juice. After introductions and sharing a little about our different backgrounds, we started with a simple question:<\/p>\n\n\n\n

\u201cWhat comes to mind when you hear the word cancer?\u201d<\/p>\n\n\n\n

It opened an honest and wide-ranging discussion. Although some people already knew one another, they said they had never spoken together about cancer and healthcare before.<\/p>\n\n\n\n

As the conversation unfolded, several themes came up. These included language and communication in healthcare consultations; experiences of trying to make sure concerns are heard and taken seriously; questions about whether medical knowledge and education adequately reflect the needs and experiences of people from Caribbean backgrounds; and experiences of healthcare sometimes feeling impersonal.<\/p>\n\n\n\n

None of these issues are entirely new to research, and one conversation with a small group in Exeter cannot represent the experiences of an entire community. But hearing directly from people can help us look differently at what is already known, question some of our assumptions and notice where there may still be gaps in our understanding.<\/p>\n\n\n\n

That was an important part of starting with conversation rather than a predetermined research question.<\/p>\n\n\n\n

NIHR guidance encourages public involvement from the earliest stages of research, including helping to shape research priorities and questions. In practice, however, involvement can still begin around an emerging research idea or area of interest. We wanted to go a step further back: beginning with conversation, without a research question or study already in mind, and seeing what we could learn by listening first.<\/p>\n\n\n\n

That does not mean simply asking communities, \u201cWhat should we research?\u201d Researchers bring knowledge of existing evidence, methods and what might realistically be investigated. Communities bring their experiences and perspectives, including things that researchers might not otherwise consider.<\/p>\n\n\n\n

The next step is to bring what we heard together with what is already known, think carefully about what we still don’t understand, and continue the conversation with the community.<\/p>\n\n\n\n

About halfway through the afternoon, we stopped for a traditional Caribbean lunch. Community engagement is often described in terms of what it can do for research, improving recruitment, refining study materials or making research more relevant. These things matter, but engagement can become transactional if we only focus on what research gains from it.<\/p>\n\n\n\n

By sharing food, stories and experiences, researchers and community members met as people first.<\/p>\n\n\n\n

One afternoon does not create trust or establish a partnership. What happens next matters. For us, that means continuing to listen, being honest about what research can and cannot address, and making sure the conversation doesn’t end when everyone leaves the room.<\/p>\n\n\n\n

Listening is not the end of the process. It is where the process begins.<\/p>\n\n\n\n

We would like to thank everyone who joined us for their openness and willingness to share their experiences.<\/p>\n\n\n\n

\u201cGreat to share hearts n minds yesterday. That surely felt like a safe n brave space.\u201d<\/em>
Leon<\/strong><\/p>\n\n\n\n

\u201cThank you for creating the opportunity to bring researchers and community members together. I think it\u2019s so important that researchers listen to all community voices. These lived experiences can help shape better research, improve patient care, support earlier and more accurate diagnosis and, hopefully, contribute to the education of future doctors and healthcare professionals.\u201d<\/em>
Nadia<\/strong><\/p>\n\n\n\n

For researcher Callum Webb, who was experiencing PPIE for the first time:<\/p>\n\n\n\n

\u201cIt really did stick with me. I thought the group was really in tune with scientific thinking, even though this session was largely about establishing trust and listening.\u201d<\/em><\/p>\n","protected":false},"excerpt":{"rendered":"

On 9 July 2026, researchers from the Cancer team and community leaders hosted Conversations with the Caribbean Community about Cancer at Exeter Community Centre. Rather than presenting research findings or recruiting people to a study, the purpose of the afternoon was much simpler: to listen. Researchers Lucy Kirkland, Tanimola Martins, Mel Barlow and Callum Webb, […]<\/p>\n","protected":false},"author":989,"featured_media":0,"comment_status":"open","ping_status":"open","sticky":false,"template":"","format":"standard","meta":{"_acf_changed":false,"_jetpack_newsletter_access":"","_jetpack_dont_email_post_to_subs":false,"_jetpack_newsletter_tier_id":0,"_jetpack_memberships_contains_paywalled_content":false,"_jetpack_hide_featured_image":false,"_jetpack_featured_image_duplicate_dismissed":0,"_jetpack_feature_clip_id":0,"_jetpack_memberships_contains_paid_content":false,"footnotes":"","jetpack_post_was_ever_published":false},"categories":[43],"tags":[],"class_list":["post-2543","post","type-post","status-publish","format-standard","hentry","category-cancer"],"acf":[],"yoast_head":"\nConversations with the Caribbean community about cancer: Listening first, by Lucy Kirkland - Exeter Collaboration for Academic Primary Care (APEx) Blog<\/title>\n<meta name=\"robots\" content=\"index, follow, max-snippet:-1, max-image-preview:large, max-video-preview:-1\" \/>\n<link rel=\"canonical\" href=\"https:\/\/sites.exeter.ac.uk\/apex\/2026\/11\/06\/conversations-with-the-caribbean-community-about-cancer-listening-first-by-lucy-kirkland\/\" \/>\n<meta property=\"og:locale\" content=\"en_US\" \/>\n<meta property=\"og:type\" content=\"article\" \/>\n<meta property=\"og:title\" content=\"Conversations with the Caribbean community about cancer: Listening first, by Lucy Kirkland - Exeter Collaboration for Academic Primary Care (APEx) Blog\" \/>\n<meta property=\"og:description\" content=\"On 9 July 2026, researchers from the Cancer team and community leaders hosted Conversations with the Caribbean Community about Cancer at Exeter Community Centre. 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