Patient perspective: life in the melanoma patient community and the emergence of the melanoma patient conference.

Abstract

Imogen Cheese speaks to Sebastian Dennis-Beron, Commissioning Editor: Imogen was diagnosed with melanoma in June 2013 (currently stage 2C no evidence of disease monitored under Professor Mark Middleton at Oxford) and has since created and writes a website blog (www.melanomarollercoaster.co.uk) as well as founded the melanoma patient conference in 2015. As an impartial event, the patient conference brings together all stakeholders involved in melanoma diagnosis, treatment and care; this includes clinicians, charities and crucially, people living and dying with melanoma. This means the only end goal for the conference are the ongoing needs of patients and families. Imogen's blog has a readership of over 2000 people - many of whom are melanoma patients in the UK. She is prolific in her contact with these patients on social media and as a result of her blog, she has been asked to represent melanoma patients in the UK as their advocacy representative at numerous conferences and events across Europe (including ECC2015 and the MPNE annual events in Brussels). Patients reach out to Imogen on a daily basis asking for support and seeking a means to improve their knowledge and obtain access to better care and information on the latest drugs and trials in the UK. She is a member of the Melanoma Patient Network Europe and speaks daily to over 300 patients on an online support group on social media. Imogen was invited by the British Skin Foundation to support them in establishing a skin cancer specific arm of their charity called ITTakes7 and has worked directly with Melanoma UK on various projects for patient interaction and information gathering. She is connected with Cancer Research UK as a patient representative with the ECMC network and involved with the Oxford hospitals as an advisor for their public engagement and planning. Imogen can be found on twitter at @MelanomaBlog.