World Cancer Congress Workshop: Meaningful engagement of people living with cancer

Background

Evidence across different disease areas has shown the value of engaging people with lived experience in the co-creation of policies, programmes and services related to them, as exemplified by the engagement of people with disabilities, and in the HIV community. Positioning patients as active participants in all aspects of their health through patient-centred research and care not only results in better clinical outcomes, but is also essential in achieving the right to the highest standard of health and its equitable realisation.

Following the publication of the World Health Organization (WHO) framework for meaningful engagement of people living with noncommunicable diseases, and mental health and neurological conditions in May 2023, there is growing momentum at the global level to recognise the expertise of those with lived experience.

The importance of the engagement of people with lived experience is gaining increasing attention in cancer control, but its adoption remains fragmented and inconsistently implemented, and is still non-existent or nascent in many low- and middle-income countries. There is a need to ensure systematic integration across the health system and to ensure engagement is truly meaningful. UICC proposes to organise a workshop on the topic in collaboration with WHO at the World Cancer Congress, 17-19 September 2024, to provide an opportunity to collectively reflect on progress since the launch of the framework. The workshop will highlight examples and best practices, enabling the sharing of experiences and learning, to inspire further action across the cancer community.

The workshop will also benefit from and be closely aligned with a panel session during the World Cancer Congress focused specifically on the implementation of the framework in the EMRO region. The workshop will build on the session discussions and lessons learned from the pilot in the region. It will seek to convene some of the same speakers and participants to ideate on how to increase political will and author new literature and evidence to support future implementation of the framework. Objectives The workshop will leverage the opportunity of the World Cancer Congress to convene stakeholders from across the cancer community, and around the world, to support implementation of the WHO framework and contribute to participatory approaches to enhance health practices, policies and services.

Objectives

The workshop will leverage the opportunity of the World Cancer Congress to convene stakeholders from across the cancer community, and around the world, to support implementation of the WHO framework and contribute to participatory approaches to enhance health practices, policies and services.

• Update on existing and upcoming initiatives that support implementation of the framework, including success stories and lessons learned.
• Identify concrete actions to support implementation of the WHO Framework for Meaningful Engagement, including but not limited to:

- Participation to, and co-creation of, the WHO Symposium on Meaningful Engagement in the lead up to the UN HLM on NCDs in 2025;

- Building the evidence base and literature on the impact of meaningfully engaging people with lived experience, with the goal of supporting advocates in garnering political will;

• Strengthen connections and collaboration between individuals with lived experience and WHO to support the framework, facilitated by the UICC Connect platform.

Participants

Participants will largely be representative of UICC’s membership network, of which 40% are patient organisations, and its network of inspiring and ambitious young leaders in cancer control. Capacity will be approximately 50 participants.

Patient group organisations: up to 30 pax.

• UICC Young Leaders: up to 10 pax.
• WHO representatives: up to 3 pax.
• Programme partners and private sector: up to 5 pax.
• Speakers & moderators: up to 5 pax.
• Organisers: up to 3 pax.