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5 Things You Need to Know... April 2018

Published on 03 May 2018 back to previous

First of all, another huge congratulations and thank you to everyone who got involved in European Colorectal Cancer Awareness Month (ECCAM) during March. The range and quality of activities we have seen across so many different countries has been remarkable, and some further highlights are below. In April, the momentum from ECCAM has continued with several major projects!   

1)    The success stories from ECCAM keep rolling in!!

It is so rewarding to hear about all the success stories from across Europe. We urge all our Affiliate and Aassociate organisations to keep sending these in! 

Cyprus Association of Cancer Patients and Friends (PASYKAF) - our Associate in Cyprus – undertook a range of events.  Most excitingly of all, they launched the new national colorectal cancer screening programme in partnership with the Ministry of Health – a hugely positive outcome for the country.

They also organised an awareness day with a giant inflatable colon at a popular shopping mall, and lectures on prevention and early diagnosis of colorectal cancer.

In Spain meanwhile, EuropaColon España organised a major debate in Madrid focused on inequity in providing patients innovative cancer treatment. Health affairs politicians and spokespeople from all parties were invited with the aim to identify the exclusive economic criteria that Regional Health Departments use to provide breakthrough drugs to cancer patients.

They also organised a meeting with colorectal patients titled "Colorectal Cancer: Everything You Have To Know" and joined a meeting organised by the Colorectal Cancer Prevention Alliance focusing on how screening programmes are developing in Spain.

EuropaColon Solvenia were as ever very proactive throughout ECCAM too, organising a major press conference, which highlighted the success of the CRC screening programme, and a lecture tour around the country to raise awareness of the disease among the general public. 

They also published a magazine for patients and their families, with information and personal stories, and organised a major symposium for primary caregivers, which attracted 130 participants.

Congratulations to everyone!

2)    Why big data is a big topic

We attended a major meeting this month with the EAPM (European Alliance for Personalised Medicine), which is taking the lead to clarify misperception around the collection and use of patient data (often referred to as ‘big data’.)

Big data has the potential to unlock insights and solutions that would never have been previously considered. At the meeting it was agreed that better information needs to be provided so that people can understand how their data is used, the benefits of this approach, and reassurance on the level of risk. We will keep monitoring this important topic and the potential implications it has for patients with CRC.

3)    Raising awareness of Essential Requirements of cancer care

The Essential Requirements of Quality Cancer Care (CRC) were published in 2017 and set out what the patient can expect to receive from their hospital and doctors throughout their care.

EuropaColon represented the patient viewpoint at an ESO (European School of Oncology) webinar review on the topic. Making these Requirements better known to the clinical community was the purpose of this webinar lead by Professor Peter Naredi, past President of ECCO. EuropaColon stressed the importance of collaboration between patient organisations and the clinical community to improve patient care across the pathway. Look out for more on this soon!

4)    Oesophageal/Gastric cancer patient survey is about to go live!

Our major patient survey into oesophageal/gastric cancer is now nearly ready to go live – keep an eye on the website during May!

This will be the first survey of its kind across Europe looking at the needs and experience of patients with an oesophageal/gastric cancer. We aim to collect responses from over 1,000 patients and we will provide the survey in 12 languages.

Survey details will be available on our website, from clinical staff at a number of local hospitals and from patient organisations. The survey is supported by EONS (European Oncology Nursing Society). Please do participate if you can! We will provide a further update next month.

5)    You are invited to our 3^rd Advocacy Masterclass

From 21^st to 23^rd June, EuropaColon will hold its 3^rd Advocacy Masterclass, in partnership with the ESMO World Congress on Gastrointestinal Cancer. Topics up for discussion include the Genome Project, the biosimilars debate, early age onset CRC, awareness and screening of CRC (including initial ideas for ECCAM 2019!) and digestive cancers.  The final agenda will be available soon on the website.

May promises to be an exciting month, particularly with the much-anticipated launch of our Oesophageal/Gastric cancer patient survey. Look out for all the updates in next month’s newsletter!