June 5, 2026
The Head and Neck Cancer Subgroup of the Northern Ireland Cancer Research Consumer Forum (NICRCF) were recently selected by Belfast Trust to share their patient involvement stories with the Public Health Agency. The involvement project called “The Human Library” was set up to understand and share the stories behind the data when recording patient and public involvement (PPI) in local health services.
Phil Menary, Co-Chair of the subgroup and Denver Lynn, patient advocate, met representatives from the Public Health Agency to talk about how they got started in PPI and what they get out of the work that they do. After their cancer treatment both members had the feeling that they wanted to give something back and working with cancer researchers seemed a great way to get involved. Working in partnership with researchers over the last two years and seeing the involvement work of the subgroup recognised in academic publications and patient resources has made it all feel worthwhile.
Ruth Boyd, Cancer Research UK Lead Nurse for Northern Ireland and Co-Chair of the subgroup also attended and shared how building relationships between patients, carers, healthcare professional and researchers has been key to making the subgroup work. Genuine partnership between everyone involved has meant that the patient voice is heard and helps to shape research on issues that are important for patient such as the psychosocial impact of head and neck cancer and the difficulty patients face with eating, drinking and swallowing. The enthusiastic approach of the group also extends to raising awareness of the signs and symptoms of head and neck cancer and to promoting vaccination for Human Papillomavirus (HPV) due to the link between high risk HPV and some cancers.