Kate Quirk is a patient advocate and a participant in the INCA Boot Camp for Research Patient Advocates.

Why did you enroll in the INCA Boot Camp, Kate?

I was first diagnosed with typical carcinoid tumour of the lung in 2003 and for many reasons, slipped through the follow-up net (no pun intended)!  In Jan 2017, I was diagnosed with Stage IV Lung Neuroendocrine Cancer and had to learn fast how best to advocate for myself.

It is my hope that by participating in the INCA Boot Camp, I can learn how to be a voice for change, to use my advocacy skills to support others and act as a bridge between clinicians and the unlucky patients diagnosed with this often misunderstood cancer. With the right support, and access to the latest diagnostics and treatments, both parties can tackle this rare cancer together.

I also believe that patients have a responsibility to educate themselves, to be their own best advocates.  Information empowers patients to make decisions, and clinicians cannot be expected to travel that route alone. But if patients are unable to advocate, there should be a reliable and trustworthy resource to help them.

My motivation to participate in the INCA Boot Camp stems from the desire to be part of an educational and research programme which addresses this.  I would hope to use my experience to liaise with both patients and clinicians to facilitate a better understanding of each other, and the constraints and emotions surrounding their positions.

Collaboration will also allow us to influence the design and planning of future clinical trials so that the outcomes truly address the unmet patient need. There is so much activity in this area of medicine right now, it’s really exciting.

Who do you perceive to be your partner in this effort to promote active patient involvement in NET research?

In the first instance, Neuroendocrine Cancer UK. They are a tremendous driving force for positive change in our country. But we can’t expand our advocacy without the continued support of our NET Specialists and research teams, who are willing to share their time and medical expertise. My personal thanks here must also go to my NET Team at The Christie Manchester for their continued support.

The most important thing you learned from the webinar this month?

Sharing knowledge is key. Other countries might have more funding or different access to research and developments, but if we share knowledge, we can collaborate to try to bring new, life-changing treatments to patients.