Background
The NI Cancer Research Consumer Forum (NICRCF) was established in 2011 to support PPI and in 2023 a NICRCF Head and Neck Cancer Subgroup was created to work with Head and Neck Cancer researchers across trusts and universities.
The work of the Forum and Subgroup goes from strength to strength. Cancer patient/carer volunteers are an immense asset to research through meaningful partnership working. PPI activities include membership of NICTN study adoption meetings, strategy development, study-specific co-design and research co-authorship. The Subgroup meets 3-4 times per year and is co-ordinated by the NI Cancer Trials Network (NICTN) at Belfast Trust. All meetings are chaired by a patient with a collective leadership approach between members, researchers and Belfast Trust staff. The genuine respect and interest across members, researchers and staff has been key in building relationships and a positive, constructive working dynamic in the group.
Situation
Despite the growth in NI Cancer Research Consumer Forum (NICRCF) membership over the years, researchers in Head and Neck Cancer (HNC) identified a need for more patients/carers with specific HNC lived experience, to partner with researchers. Following a public meeting highlighting research and this PPI opportunity, initially fifteen people joined the NICRCF HNC Subgroup. Members are passionate advocates of PPI and the value of research to increase understanding of HNC, improve public awareness and early detection, develop new HNC treatment, reduce treatment side-effects and enhance patient/family care.
The usual format of subgroup meetings provides an opportunity for researchers to present their ideas and gain patient perspectives. Researchers may then invite a smaller number of members to become involved in grant or project development on a more ongoing basis. Meetings also include time for project updates and future planning. The work of the group extends beyond the meetings themselves, through email communication and ad hoc meetings as required, and members may also take on project-specific PPI roles.
Just one example of the impact of PPI and the success of subgroup–researcher partnerships is the co-creation of a public awareness campaign in 2025–2026. The group developed a series of short, engaging videos to highlight HNC, featuring conversations between patient representatives and researchers/clinicians. Each video was designed to be conversational and accessible, covering topics ranging from “signs and symptoms” to “the science behind HPV.” The videos also showcased the research journey, from lab-based work to lived experience and PPI involvement. The campaign was timed to align with Mouth Cancer Awareness Month (November 2025) and Head and Neck Cancer Awareness Month (April 2026).
Task
The opportunity to take part in the public awareness campaign was open to the, then eighteen, members of the NICRCF Head and Neck Cancer Subgroup. Members who were available on the designated date for video recording volunteered to take part.
The HNC Subgroup remains open to patients and carers impacted by these cancers. All are welcome to apply to join the Forum firstly and then, this Subgroup.
Action
For the awareness campaign, video messages were co-developed and in advance of the recording date, all those involved attended an on-line meeting to meet the videographer and confirm plans.
Funding for the videos was kindly provided by the Johnston Cancer Research Centre and the Queen’s University Belfast (QUB) Agility Fund, for support of research engagement and impact.
This video campaign was a truly collaborative venture involving QUB (Johnston Cancer Research Centre, Heads Together- Head & Neck Cancer Research Group, the KN Cheung SK Chin InterSim Centre), Ulster University, NI Science Festival, Belfast and South Eastern Health and Social Care Trusts, British Dental Association and Cancer Focus NI, along with the members of the NICRCF Head and Neck Cancer Subgroup.
The series of videos were launched in November 2025 and April 2026
| Video 1
Personal and Public Involvement (PPI) in Head and Neck Cancer Research
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Featuring David Rodgers, Patient Advocate and Ruth Boyd, Cancer Research UK Senior Research Nurse, Northern Ireland Cancer Trials Network, Belfast HSC Trust.
Click here: Head and Neck Cancer Awareness – PPI in Head and Neck Cancer Research
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| Video 2
What is Head and Neck Cancer?
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Featuring David Rodgers, Patient Advocate and Professor Cherith, Semple Head and Neck Cancer Nurse Specialist in South Eastern HSC Trust and Cancer Researcher, Ulster University.
Click here: Head and Neck Cancer Awareness – What is Head and Neck Cancer? |
| Video 3
HPV and Head and Neck Cancer
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Featuring Phil, Patient Advocate, Terri Flood Lecturer at Ulster University and
Shaima, PhD Student, Queen’s University Belfast. Click here: Head and Neck Cancer Awareness – HPV and Head and Neck Cancer
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| Video 4
Voices of Research
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Featuring Denver, Patient Advocate and Dr Stephanie Craig, Senior Lecturer in Head and Neck Cancer Research, Queen’s University Belfast.
Click here: Head and Neck Cancer Awareness – Voices of Research
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| Video 5
Signs and Symptoms of Head and Neck Cancer
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Featuring Professor Gerry McKenna, Queen’s University Belfast and Consultant in Restorative Dentistry and Prosodontics Belfast HSC Trust.
Click here: Head and Neck Cancer Awareness – Signs and Symptoms
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| Video 6
Your Mouth, Your Health
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Featuring Graham, Patient Advocate and Kifah, PhD Student, Dentistry, Queens’ University Belfast.
Click here: Head & Neck Cancer Awareness Campaign – Your Mouth, Your Health!
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| Video 7
Research in Action
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Featuring Richard, Patient Advocate and Dr Laura Graham, Cancer Researcher, Queen’s University Belfast.
Click here: Head & Neck Cancer Campaign – Research in Action |
Result
This public awareness campaign would not have happened without the involvement of the NICRCF Head and Neck Cancer Subgroup members. The Subgroup has been instrumental in driving the need to profile the message of research and project partnership in accessible ways to maximise public impact.
Subgroup involvement in the message and content of the videos adds approachability and authenticity through lived experience, alongside the research expertise.
Since their launch, the videos have had several thousand views on social media platforms.
All the videos featured in a Head and Neck Cancer Research “Reels, Research and Partnership” showcase event at Queen’s Film Theatre, Belfast in March 2026, attended by patients, carers, researchers and health care professionals. This event reflected on the work of the group since its inception. It was a true celebration of a partnership which continues to generate further research ideas and awareness opportunities through collaboration.
Some of the other highlights of the impact of the group include, for example, conference involvement and recently published research and patient resources:
Conference co-presenter
Irish Association of Cancer Research (IACR) Annual Conference, 01.03.25, Joint panel presentation and co-developed poster presentation ‘Patient partnerships enhance public engagement activities: a co-design approach to create an open day tour explaining how patient tissue can be used in cancer research,’ David Rodgers, HNC Subgroup inaugural Co-Chair and Laura Graham, Researcher
Academic publications
• A Multinational Association of Supportive Care in Cancer and International Society of Oral Oncology Clinical Practice Statement: Management of social eating and drinking challenges in adults with cancer – PubMed
• Suicide and Head and Neck Cancer: A Systematic Review With Meta-Analysis and Narrative Synthesis: https://onlinelibrary.wiley.com/doi/full/10.1002/pon.70233
Resources
• Patient Education on Head and Neck Lymphoedema produced by Ulster University ad Health and Social Care: https://youtu.be/S0mfJk3SWGw
The subgroup continues to flourish and has active involvement in on-going research projects as well as plans for new research involvement partnerships in the coming academic year.
Feedback or quotes from participants
“We want to better understand the disease, improve treatment options and to help people live well after treatment…we couldn’t do it without patients and the public. Their voices shape the questions we ask and the impact we make.”
Dr Laura Graham, Researcher
“Being involved in research is a privilege and gives me hope. It shows me that people are working hard to make things better for current and future patients.”
Richard Kendrick, NICRCF Head and Neck Cancer Subgroup member
“I have discovered PPI can take many forms. Great to be involved in the public awareness campaign videos which allowed me to contribute to PPI in a different way”.
Denver Lynn, NICRCF Head and Neck Cancer Subgroup member
‘It was a pleasure to participate in the Head and Neck Cancer public awareness campaign videos and to help in however small a way that I could in spreading the messages relating to this important topic. It was also great to meet the various health professionals involved and to avail of their expertise. The only strange/disconcerting part was to see one’s self on camera – but important to remember it was all for a good cause!’
Graham Kinniburgh, NICRCF Head and Neck Cancer Subgroup Member
