Interview with Emma Kinloch, Patient Consultant on the ECMC Network Strategic Advisory Board

Patients are at the heart of all ECMC Network activity, and we are very grateful to Emma Kinloch for joining our Strategic Advisory Board in 2024. After one year being active across a host of different activities in the Network, we met with Emma to learn more about her experiences and her perspectives on the progress the ECMC Network has made.

1. Please can you tell us a bit about yourself and your experience?

I have been involved in cancer patient advocacy for over 10 years. I started at the National Cancer Research Institute (NCRI) as a ‘consumer’ or patient advocate on their Head and Neck Research Group. I went on to be their consumer lead and chair of the patient advocate forum. In 2019 I co-founded Salivary Gland Cancer UK with Dr Metcalf who is a medical oncologist based at the Christie. Our Charity is founded on 8 aims that were co-produced between patients and clinicians. It was my lived experience of a rare salivary gland cancer with limited treatment options and no approved drug therapies that set me on this path.

2. In your view, why is the ECMC Network so important?

The world of cancer research is moving rapidly and is extremely complex. Researchers, clinicians, institutions and patients need to work collaboratively and share knowledge, resources and expertise to move forward cancer medicines development and improve patient outcomes. For cancers with limited (or no) drug treatment options this is especially important and, the ECMC Network’s focus on first-in-human and early-phase clinical trials gives patients access to new therapies before they are widely available, as well as being a critical step in developing treatment options for future patients.

The ECMC network spans the whole of the United Kingdom. This facilitates a unified approach and allows for collaboration rather than duplication. It also facilitates the identification and addressing of inequalities, both in terms of access to key medicine development tools such as genomic testing and, in trial recruitment. The inclusion of both adult and paediatric centres in the ECMC Network is another important aspect. Childhood cancers are rare but can have biological mechanisms relevant and being actively researched in adult cancers. Bringing both groups of researchers together allows for this knowledge to be shared and to ensure that all patients are catered for (including Teenagers and Young Adults).

3. Why do you think it’s so important to have patient involvement embedded in a network focused on early phase oncology trials?

Where do I start? It is fundamental to the work that is being done. The most obvious reason to me is that of the question of risk. It is likely that a patient who is eligible for an early phase trial will perceive the risk very differently, not just to a clinician or regulatory agency, but also, to a healthy patient. It is of paramount importance that the views of the patient population that the research is targeting are involved in the decision making around protocols, patient reported outcomes, acceptable toxicity levels, and risks. We need to ensure that trials are feasible for a patient to take part in and include equity of access and diversity considerations. Patients are best placed to decide that!

4. How do you feel your perspective as a patient has contributed to discussions and decision-making within the Network?

I hope that by bringing the voices of the patients that I have the privilege of representing, and by ensuring that their challenges, hopes, experiences and views are taken on board, I have enriched discussions and informed ethically sound decision-making. Sometimes it’s easier for a patient advocate to express frustrations that clinicians may also be experiencing and by doing so, inform a decision-making process that is equitable and fair to all. Researchers and clinicians are aware of the challenges that their patients face and are equally frustrated by them. I hope that I have been able to articulate and state some of those in a way that is impartial and non-specific to a particular cancer type or location or, any other variable!

5. What are you most excited/concerned about in the future of the early phase oncology environment?

There is a lot to be excited about with quite a few new therapies emerging! Whilst there is no doubt these hold great promise for improving patient outcomes, my concerns are around side effects, long-term effects and cumulative toxicities. It takes time to understand how a new treatment affects us over the long term, and it is imperative that we collect as much information as possible – long-term follow ups, reliable real-world data collection and, sharing of data, is key to this. Costs and equitable access to these new therapies are, of course, also a concern.

6. What advice would you give to other patients who might be thinking about getting involved in research or advisory roles?

Go for it! There are many people who will be delighted to share, mentor, challenge, signpost and shout out about, and for, you. If you have a desire to make things better, then you must give it a go. Your voice and experience is important, needed and valued. People will take the time to work with you on any areas that you need support or training in and, you will be made to feel very welcome.

7. Any final thoughts you’d like to share about your journey so far and what lies ahead?

It is encouraging to see advances in understanding and increased research activity in rare cancers including salivary gland cancer, but treatment options remain limited, trials are not opening in the UK and there is still much work to be done. On October 4th the world’s first Salivary Gland Cancer Day will be launched. The theme is unity ‘“One Community, One Cause: Standing Together in Solidarity for Positive Change”. The theme expresses what we all need to do to move forwards – work together, share resources and improve patient outcomes. My thanks go to all who are working hard to do that very thing.