Cancer patient groups are at the heart of the UICC community, representing about 40% of all UICC members. They range from grassroots support groups to regional and global coalitions of patient organisations. Following the adage “nothing about us, without us”, whereby populations affected by a decision or policy should participate fully in the process, patient-centred approaches and patient engagement should be at the front and centre of global cancer control. From increasing peer-support, patient navigation programmes and strengthening the patient voice in advocacy, the impact of the COVID-19 pandemic on the cancer community further highlighted the critical importance of patient engagement.
Patient organisations need to acquire the necessary knowledge and networking opportunities to voice their perspectives and feel empowered to have their say in research, care and support, as well as survivorship programmes and be considered as a driver for change in all health systems. UICC is therefore increasing the focus on patient engagement through opportunities both at the regional and global levels.
“Patients with cancer are particularly vulnerable to COVID-19 and we believe that our voice as patients’ representatives is important as we are telling patients’ side of the story. Quick adjustments in patient support, expanding patients’ assistance and thinking outside the box to meet this emerging need of patients are essential during this pandemic time.”
– Mary Wong, Chairman, Global Chinese Breast Cancer Organisations Alliance.
As part of the offer for the global community, UICC delivered a Master course on “Multisectoral Approaches for Patient Engagement for Better Cancer Control” from July to November 2020. This e-learning course saw the participation of 93 individuals from member organisations from all over the globe. More than 20 experts from academia, civil society and the private sector contributed through webinars and podcasts to provide an overview on the best strategies and tools to further engage people living with cancer at all stages of the cancer control continuum.
UICC held a webinar entitled “Re-thinking Pink October activities in times of Covid: sharing plans and what can we learn for the future” as part of the Master course on Patient Engagement in September 2020, ahead of the launch of the Breast Cancer Programme. Through five case studies of breast cancer organisations, members showcased their creativity in adapting their events and activities to the current situation, for example a video campaign in Lebanon named the Bread Exam by the Lebanese Breast Cancer Foundation or the Pink Angel campaign with the online launch of a book by the Global Chinese Breast Cancer Organisations Alliance.
The positive feedback from participants in the 2020 Master course led to its transformation into an on-demand online course. This will be available early in 2021, enabling all members to improve their knowledge on relevant topics such as patient’s rights, the power of patient data and storytelling, and the role of patients’ engagement in the quality of care and in decision-making processes.
At the regional level, the Patient Group Mentoring programme extended its reach in 2020, having started as a pilot project in the Asia Pacific region in 2018. This mentorship programme is dedicated to building the capacity of a representative cohort of patient groups and creating connections and regional networks. To do so, the programme provides tailored assistance and support through monthly virtual meetings and a collaborative platform, where groups can share information and interact, as well a dedicated programme of collective activities with webinars and in-person workshops responding to their specific needs. The visibility of the organisations and voice of the patients is raised by ensuring their attendance and active participation at all UICC convening platforms as well as to external conferences.
The aim is to minimise some of the traditional barriers and bottlenecks that prevent active engagement by patient groups, for instance their inability to attend conferences due too small size or being too grassroots. Indeed, either they are not aware of events because are not well connected, or they are not invited because they are to small to be on the hosting organisation’s radar, or they cannot afford the registration fees or travel costs.
UICC has expanded the programme into the Eastern Mediterranean region (EMRO), having selected five breast cancer patient support groups in EMRO to join the programme. This new regional programme for patient groups is part of and supported by the broader Breast Cancer Programme, as part of its package of activities. Today, UICC is pleased to announce the names of the first cohort:
Through dedicated online sessions, mentoring and learning opportunities, these five groups will be encouraged to tackle identified areas of common interest and support each other through the sharing of best practices and expertise.
Alongside these specific activities focused on patient engagement, UICC continues to support patient-centred approaches in all its endeavours, as well as to engage members at the regional level to ensure that patient voices are heard.