ESMO Press Release: World Cancer Day 2016 – ESMO and Patient Advocates, Together to Support Research

 Lugano, Switzerland. On World Cancer Day, ESMO, the leading European professional organisation for medical oncology, puts cancer patients centre stage by organising a workshop dedicated to exploring ways that advocacy networks can drive research. The workshop will take place in Brussels 5-7 February.

“Patients are the largest under-used resource of our health systems,” said Dr Bettina Ryll, Sweden, Chair of the ESMO Patient Advocates Working Group. “They play a crucial role in adequately capturing patient needs and influencing change, such as equitable and sustainable access to therapies; patient-centric clinical trial designs and direct contribution to pharmacovigilance in order to increase the safety of medicines by reporting side-effects.”

This year’s motto for World Cancer Day is: 'We can. I can'. “The ESMO workshop is a clear demonstration that this is very much true,” says Ryll.

Oncologists and other professionals are constantly pushing the edge of science to find new treatment options. “Patients must not only be involved but can actually drive research,” said Ryll. “This workshop will give participants new insights and tools to help turn information into action.”

During the workshop, Prof Rolf Stahel, ESMO Past President, will present the ‘mapping for access’ project. “Patient access to cancer medications in Europe (and elsewhere) is a key issue. Patients can play an active role in mapping access to treatments and in turning data into advocacy actions,” explained Stahel.

“As a society, we do not only have to take care of today’s but also of tomorrow’s patients, so the expertise of the current patient generation helps us to better serve future patients,” says Ryll.

ESMO advocates for improved access to medicines, both innovative ones and those that are often taken for granted in daily practice. To that end ESMO cooperated with the World Health Organisation to update their Essential Medicine List last year.

“Some cancer treatments are still not accessible and patients have a major role to play to promote the equitable access and use of effective medicines,” said Stahel.

“Patients are the ultimate reason for healthcare and the primary data source to measure real need and impact,” says Ryll. “Advocacy groups with their wide-reaching networks are uniquely positioned to capture this type of information. The ESMO workshop will focus on how we, as advocates, can leverage the research potential of our networks and produce high-quality data as sound basis for our advocacy work.”

“Please follow us on social media this weekend and become active supporters for patients driving research! Cancer can happen to anyone,” concluded Ryll.

The ESMO Patient Advocates Working Group’s (PAWG) main mission is to provide professionals with patient input in order to optimise healthcare in Europe and worldwide. It also advocates for the continuous improvement of cancer-specific information and education; the strengthening of patient autonomy and the support of patient rights.

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Notes to Editors:

Cancer statistics:

Cancers figure among the leading causes of morbidity and mortality worldwide, with approximately 14 million new cases and 8.2 million cancer related deaths in 2012 (1).

The number of new cases is expected to rise by about 70% over the next 2 decades. www.who.int/mediacentre/factsheets/fs297/en/

Cost of cancer in Europe:

126 billion EUROS, according to Oxford University: www.ox.ac.uk/news/2013-10-14-cancer-cost-europe-€126-billion-2009

Patient advocacy groups represented at the ESMO workshop 2016

AnticancerFund, BORKA - for each new day, Bowel Cancer UK, CML Advocates Network, ECL, ECPC, Europa Colon, Europa Donna, Foundation of Hungarian Oncohematology patient, International Neuroendocrine Cancer Alliance, Kolarda Fund, LUCE, Lymphoma Coalition, Melanoma Patient Network Europe (MPNE), Myeloma Patients Europe (MPE), Romanian Skin Cancer Foundation, SPAEN, Stichting tegen Kanker, the IBTA, Udruga SVE za NJU.