EVOLVE: giving patients a mEaningful VOice in the design and deLiVery of carE
EVOLVE is a unique collaboration of a profession society (European Association of Urology), guideline panels, researchers, clinicians and patient representatives to improve guideline development and implementation for genitourinary cancers in Europe. The aim of the project is to develop a model of patient involvement that will give patients a meaningful voice in the design and delivery of care and will investigate how wider stakeholders can help to integrate the patient voice into guidelines.
UCAN has been set up as a charity dedicated to raising awareness of urological cancers, and improving support and quality of life for people and families who are affected.
It will do this by creating a centre of excellence in the north of Scotland to spearhead a vigorous programme encompassing all the following:
health promotion work and awareness raising of urological cancers in businesses and communities throughout the north of Scotland, with the aim of encouraging earlier diagnosis in the future, resulting in more positive prognoses for more people
improve information for everyone on awareness and prevention, benefit of early diagnosis, deciding about treatment and coping with the unwanted effects of treatment
study the best ways to treat patients with urological cancers, and to manage the unwanted effects of treatment
assess the effectiveness of different treatments and use this to help patients make decisions about their own care
give patients information and skills to help them be actively involved in decisions about their own treatment and care
work with patients, their families and the wider public to better understand the problems experienced by patients as they go through their ‘journey of care’
create a support network for newly-diagnosed patients and their families
The METIS Collaboration was established in 2011 involving the Academic Urology Unit (AUU), University of Aberdeen, the UCAN cancer charity and (then) the Institute of Work, Health & Organizations, University of Nottingham. Currently, the Collaboration also involves the Institute of Health & Society (HIS), Newcastle University and the Centre for Sustainable Working Lives (CSWL), Birkbeck University of London. It has the support of Macmillan Cancer Support in Scotland. The work of the METIS Collaboration is focused on the psychological, social and organisational issues that relate to the impact of chronic illness on work and working lives. The current focus is cancer survivorship.
Liver cancer is the fifth most common cancer worldwide and the number of people being diagnosed with, and dying from, liver cancer has increased over the past 10 years. Early diagnosis and timely and appropriate treatment are known to improve results for patients. However, in the UK, not all liver cancer patients get a timely diagnosis and access to the best treatment. When this happens, patients have poorer quality of life, and reduced chances of survival. These inequalities in access affect underserved groups such as people experiencing social disadvantage or living in remote and rural communities. Currently we don’t fully understand why these inequalities exist, and until we understand more about how and why they arise, they will be very difficult to reduce.
The purpose of this partnership is to build a Community of Expertise (a group of individuals who share interest in liver cancer) through conversations with key stakeholders. This will enable us to develop the understanding needed to reduce inequalities in liver cancer diagnosis and treatment. We will work closely with charities, community groups and patient groups such as the British Liver Trust, Egality Health, Can-Survive UK, BME Cancer Communities and the Wai Yin Society. This partnership will include communities that typically do not participate in liver cancer research but are most impacted by the current inequalities. Our public and patient partners will be involved in the design and conduct of the partnership, as well as any subsequent research.
Aims
The aims opf the partnership are as follows:
i) identify what equitable and appropriate care looks like across the UK (including understanding barriers and facilitators to diagnosis and appropriate treatment allocation)
ii) understand patient experiences of the current clinical pathway and
iii) develop, pilot and evaluate an ‘optimal’ new HCC clinical pathway.
Key Time Points in the Cancer Journey
Upcoming ICANEQUAL Workshops
ICANEQUAL Workshop Two: Monday 27th November 2023, 9 -12 (virtual)
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