By Tamara Kahn, CEO at Oracle Cancer Trust

Published: 1 September 2023

AMRC’s Festival of Partnerships is shining a light on partnering – how best to do it, the challenges it brings, and showcasing great examples from the sector. A highlight of the Festival so far has been hearing from our member charities about the diversity of ways in which to partner: with each other, industry, government and more. We didn’t think it was fair to keep all these insights to ourselves. So, in this ‘Showcasing Partnerships’ blog series we’ll be hearing from some of our charities about these partnerships, their challenges and successes, as well as lessons learnt. 

Our next blog is from Oracle Cancer Trust, the UK’s leading head and neck cancer charity. The charity’s mission is to improve head and neck cancer patient quality of life and outcomes in the UK, by enabling greater understanding, knowledge and awareness of head and neck cancers. Its purpose and activities are aimed at improving quality of life outcomes for head and neck cancer patients. To this end, Oracle Cancer Trust supports and runs four types of projects which are linked to the four pillars of its strategy and the RACE to beat head and neck cancers. 

What is your role at your charity and what does a typical day look like for you?

I’m CEO of Oracle Cancer Trust and Chair of the Head and Neck Cancer UK Coalition. My typical day includes touching base with my team, going through emails and responding to requests for support and input, and high level of touchpoints with key stakeholders.

Tell us about a partnership your charity has been involved in.

Oracle Cancer Trust is part of the HPV Coalition. This expert advisory group of leading patient organisations, professional groups, clinicians and expert individuals came together in 2022 to inform and advance the UK’s journey towards elimination of HPV-related cancers. Our involvement is very important given the rise in HPV-positive head and neck cancers (occurring in the oropharynx primarily). Our aim was to collaborate with, learn from and support others who have a common aim and ambition. The Coalition’s mission is to build stakeholder consensus to eliminate a whole group of cancers – which account for 5% of all cancers globally in both men and women – and pursue policy and advocacy activities towards this goal.  

In particular, we were keen to see increased recognition of the growing rate of HPV-positive head and neck cancers (which is now the largest HPV-affected cancer site). The HPV Coalition is co-chaired by Jo’s Cervical Cancer Trust and the NOMAN is an Island: Race to End HPV Campaign and is just about to celebrate its first birthday. Our primary focus in year one has been the development and launch of our Roadmap towards the elimination of HPV-related cancers. While the UK has not yet committed to pursuing an elimination strategy – unlike world leaders such as Australia – we believe the foundations are in place for the UK to gain ground globally. The Roadmap serves as our call to governments across the UK to take action, while providing a blueprint for how elimination can be delivered.

What were the main benefits of this partnership as opposed to doing the same project alone? 

Oracle Cancer Trust is a small charity, with limited resources and big ambitions, so working in partnership with others is both a strategic vision as well as grounded in practical reality to have the biggest impact. Being part of the HPV Coalition enables us to work alongside organisations with a common challenge to make a difference together. Although we represent different cancer sites and organisations, it allows us to learn from others, gain insight into different approaches, and access data and resources that might be limited working alone. Most importantly, by working together we have a stronger voice to raise more awareness of HPV-linked cancers. It's important that we segment our audience differently and that we personalise our messages, but there are fundamental commonalities. Having a shared goal is critical to successful advocacy. We have more influence on improving HPV prevention and more impact as a group, with key stakeholders, partners and allies in government, across the NHS and with industry. 

What makes charities such good partners?

Charities play an essential role in policy and advocacy work. This is never clearer than in healthcare: by understanding and speaking with patients, charities are uniquely placed to inform the development of recommendations that will have a material impact on their lives. This was demonstrated clearly in the HPV Coalition’s parliamentary launch event, hosted by Jess Phillips MP, which saw patient advocates speak compellingly about their own experiences of HPV-related cancer.  

What are the main challenges you’ve faced in partnerships and how did you overcome them?

Some Coalition members have stronger and more organised voices than ours. We realise the need to provide value as a minority voice, while ensuring that the agenda encompasses all members. We have not only advocated for head and neck cancer but other more ‘minority’ cancer voices. From the Coalition leadership perspective, having such a broad membership means there’s lots of voices in the room. While this is a nice problem to have, it does mean a long list of policy asks. Combining the strengths of clinical, patient and policy experts involved in the Coalition is key to crafting messages with the desired impact. 

If you could give one tip to another charity entering a similar partnership, what would it be?

Get involved as early as possible and be realistic on the time needed to ensure you add and get value. As the saying goes ‘the amount you put in will determine the amount you get out’. As a group, taking time to develop a common goal, that everyone can get behind, is a critical enabler to a partnership working. 

If your charity has a partnership you’d like to share via this blog series, we want to hear from you! Get in touch with Ellen at [email protected]. Read other blogs in the series on our Festival of Partnerships: blogs page.

Note: Support for the HPV Coalition is provided by BD UK Ltd, Hologic UK Ltd, MSD UK Ltd, and Roche Diagnostics UK Ltd, who fund HPV Coalition meetings, activities, and the HPV Coalition secretariat, delivered by Incisive Health. Corporate supporters have no influence or input in the selection or content of HPV Coalition projects or communications. Members of the HPV Coalition receive no payment for their involvement in the group, except to cover appropriate travel costs for attending meetings. For further information on our please find the HPV Coalition’s Terms of Reference.