Since 2002 the ECL Patient Support Working Group (PSWG) connects cancer care experts who work together on topics such as access to insurance and financial services, return to work, caregiver support, cancer rehabilitation and palliative care. PSWG members share best practices, develop guidelines and other information sources to raise awareness and improve quality of care, and seek to empower the patient voice in national and European policy-making.

PSWG Chair’s Introductory Words

The entire world slowed down between 2020 and 2021 because of the COVID-19 pandemic. The negative consequences of this on the quality of care, health systems, and survivorship rates have already come to the surface. The pandemic has been having a negative impact on everyone, including cancer patients’ physical and mental well-being, their access to treatment, care and quality time with their families. Patients and healthcare professionals continuously face challenges on how to cope with the current situation. The ECL Patient Support Work Group (PSWG) has also been affected by the pandemic, as we have been unable to meet in person since 2019. Yet, our dedicated members have never stopped working towards our common goals.

Quality-of-life during and after cancer is an area that requires further research and attention if we are to deliver high-quality care to patients and survivors. The quality of cancer care across Europe is constantly evolving thanks to the dedication of oncology professionals (psychologists, doctors, nurses, carers, etc). We are also getting a clearer picture and more data on how side effects influence patients’ and survivors’ personal life and the life of those around them.

Patients are much more empowered and seek larger participation in decision-making. In this fashion, multidisciplinary care, patient co-decisions, and a ‘health-in-all-policies’ approach will grow in importance in the coming years. How can the patient and the healthcare professional meet each other in their own needs and what is the best way to approach the relationship?

Members of the PSWG, consisting of cancer care specialists, are working together to meet the needs and wants of patients, survivors and caregivers as well as to improve the quality of cancer care across Europe. The Association of European Cancer Leagues (ECL) believes that collaboration between different cancer societies can positively impact the lives of patients, survivors, and caregivers as well as improve the standards of care.  

In the last couple of years, we have worked hard to put patients and a patient-centric perspective at the heart of our work and publications on how to manage cancer in the workplace and how to improve communication about sexuality and intimacy-related issues. We have also collected information on the variety of much-needed rehabilitation programmes provided by cancer leagues in their communities and published the second edition of the Cancer Rehabilitation Atlas.

Nevertheless, we also need European decision-makers to help us achieve our mission. Among others, the PSWG has called for (i) including cancer patients’ perspectives in employment policies, (ii) addressing cancer in a holistic way beyond traditional treatment-focused policies and guidelines, (iii) full integration of supportive care services throughout the pillars of Europe’s Beating Cancer Plan.

Despite different national contexts and cultural differences, the health and well-being of patients know no borders, and learning from best practices is one of the ways to move forward together.  

Monick Leal

Chair, ECL Patient Support Working Group