World Cancer Day 2024: empowering patients and patient advocates to participate in cancer research and care
February 2, 2024
February 4th marks an important day in the fight against cancer: it is World Cancer Day (WCD), international awareness day to raise worldwide attention and inspire action for a cancer-free future.
Last year, Rising Tide Foundation for Clinical Cancer Research (RTFCCR) celebrated the WCD by sponsoring the creation of information videos to instruct health providers to identify early signs of cancer in the pediatric population (https://beaba.org/en/guia/ ).
This year, in celebration of the WCD 2024, RTFCCR will support the creation and implementation of WECAN’s Patient Experience Data (PED) Training Course – Module 2. This online, free, and interactive course is designed to empower patients and patient advocates to actively participate in evidence generation, research, and patient care.
The PED Course – Module 2 is part of the “Evidence-Based Advocacy” training courses hosted on the WECAN Academy online learning platform. These courses aim to equip patient advocates with the necessary skills to assess patient needs both in a quantitative and qualitative way. This is achieved through the collection and production of data that adheres to rigorous standards, which can be utilized to inform a variety of stakeholders and to drive the community’s advocacy efforts. The implementation of evidence-based advocacy represents a shift in paradigm, where the patient community is encouraged to move from sharing anecdotal experiences to advocating for change with solid research and data.
The PED Training Course is designed to provide participants with a thorough understanding of PED focusing on three core areas:
- Define and differentiate between various types of PED, such as patient preference and patient-reported outcomes (PROs).
- Apply PED in evidence generation to support research, influence health policy and improve treatment access.
- Understand the methodological and regulatory frameworks governing PED.
The RTFCCR sponsored Module 2 of the WECAN PED training. This module focuses on PROs which are essential in capturing data directly from patients regarding their health condition and treatment experiences. PROs offer invaluable insights into a patient’s health status, the efficiency of treatments and quality of life. This module will therefore delve into specifics of PROs, their application and methodologies used for their collection and analysis.
This represents a great opportunity to advance patient-centered outcomes and improve the quality of life of people living with cancer.
About WECAN / EPAI
The European Patient Advocacy Institute (EPAI) is a non-profit institution registered as a charitable organization in Germany that hosts large evidence- and education-related advocacy initiatives and programs for the cancer and hematology patient communities (e.g. EPAI has hosted WECAN Academy, European Atlas on Clinical Trials, WECAN Evidence-Based Advocacy Program, WECAN Virtual Meetings Knowledge Base). EPAI runs the WECAN Secretariat and acts as legal host for most WECAN projects, since WECAN is an informal network of the cancer patient community but not a legal entity. EPAI is deeply interlinked with the cancer patient community on a European and international level and respects and strengthens the roles of patient organizations, without competing with them.