“Choice” was one of the most powerful words resounding during the Patient Advocacy Track meetings at the European Society of Medical Oncology (ESMO) Congress in Copenhagen, Denmark, recently. The delegates amounted to 20,000 and included oncologists, pharma professionals, patient advocates and journalists.

Patient advocates include people diagnosed as having had some form of cancer and survived.  I was one of them campaigning for additional say in all phases of the therapeutical process, research, treatment and medical care.

An example of the increasing role of the patient is the fact that ESMO announced that it recognises patient advocates as healthcare professionals and opens their membership at the society.

It is the first time that a healthcare professional group acknowledges formally that patient advocates in healthcare and research are seen as professionals with full membership rights, including votes and access to information, education expert groups and research projects.

The Patient Advocacy Track meetings at the conference were a great and inspiring experience. It was a pleasure to meet other cancer patients. Through social media we will continue with the discussion about what patient advocacy can really achieve.

We can do this by moving away from the moral viewpoint – “you should listen to the patient”  – to the practical standpoint – “why only a patient can give you this information and this is how everyone is going to benefit” advocacy.

Cancer patients need to be aware of the increasing financial constraints as survival too often depends on access to new medicines.

Patient advocates play a crucial role in supporting and informing cancer patients and caregivers and in providing valuable input into healthcare decision-making processes. In this setting, the education of patient advocates becomes critical.

EuropaColon is committed to preventing deaths from colorectal cancer and improving the quality of life and support for patients and family members

This looks like a race between patient advocates and everybody else, with patient advocates being the proverbial tortoise. It would be beneficial if all the stakeholders involved understand the characteristic of patients which leads them to stop receiving therapy.

I was really touched by a sentence read out by Ali Stunt, founder and chief executive of Pancreatic Cancer Action, diagnosed 2007 Belfast, Northern Ireland.

“I have,” she said, “many hats, but the most important is to be a cancer patient.” As a survivor patient, I believe that this bond which unites us beyond borders gives us the strength to fight and campaigning advocacy and be the voice to defend and empower patients.

The Patient Advocacy Track gave me the ideas and the strength to bring advocacy to colorectal cancer patients which I represent as President of the Malta Colorectal Cancer Awareness Group.

As patient advocacy working with  all type of cancers in Malta, we should instigate discussion with our MEPs to promote this initiative with their political groups so that the European Commission discusses and sets up  an EU Survivorship Plan for Cancer.

In the meantime locally it would help immensely if there is an increase in the health budget covering prevention, screening, prompt diagnosis, prompt access to best care and research and innovation.

The question we should all ask is: are we achieving best practise across Malta?

As an active committee member in the Expert Patient Advisory Group (EPAG) within EuropaColon, a full-day meeting was held.  The meeting was well attended by Expert Patient Advisory Group including EuropaColon officials.

Ideas were exchanged on creating a new educational website for Colorectal Cancer (CRC) that will provide information for patients at every level of the pathway. This will include short videos of patients’ experience with the disease.

EuropaColon is committed to preventing deaths from colorectal cancer and improving the quality of life and support for patients and family members. EuropaColon aims to unite patients, caregivers, healthcare professionals, politicians, the media and the public in the fight against colorectal cancer.

Malta Colorectal Cancer Awareness Group is associated member with EuropaColon. The group is an NGO launched last February and forms part of the National Cancer Platform in Malta.  Our mission is to knock colorectal cancer out of the top three cancer killers.

We are doing this by championing prevention, funding cutting-edge research and quality patient support services.

Anthony Rossi is survivor patient and President of the Malta Colorectal Cancer Awareness Group.

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