Patient engagement

In accordance with the right to health, which includes the right of all individuals and communities to “active and informed participation on issues relating to their health”[1], the participation of patients in “all health-related decision-making at the community, national and international levels”[2] is increasingly recognised around the world. The engagement of patients, survivors and caregivers in decisions that concern them is qualified as an indicator of 'health democracy'.  

All along the cancer prevention and control continuum, people-centred approaches are key to ensuring the legitimacy, relevance and quality of all cancer policies. From the adage “nothing about us without us”, patient engagement has led to the development of the “patient as partner” as well as the “patient expert” approaches. People living with cancer have a right to  meaningfully take part in all policies and decisions that are in their interest.

In the field of non-communicable diseases (NCD), the NCD Alliance led a campaign for the 'Global Charter on Meaningful Involvement of People Living with NCDs' and the WHO has developed a Framework for meaningful engagement of people living with noncommunicable diseases, and mental health and neurological conditions launched in May 2023. 

UICC podcast on patient engagement

Read the podcast transcript here 

The role of cancer patient organisations

The pivotal role of cancer patient organisations as a vehicle for the sustainable representation of the patient voice and the collective experiential knowledge sharing in institutions and policies has been also recognised in the literature[3]. Participatory approaches, with direct engagement of such organisations in policies and particularly in the development and implementation of national cancer control plans, are key levers for implementing the right to health in cancer control decision-making processes. In this sense, the participation of cancer patient organisations is a key requirement of “health democracy”[4]

A vibrant community in UICC’s Membership

About 40% of UICC Members are qualified as patient support groups. This represents a community of almost 500 organisations worldwide. In Asia-Pacific and Latin America, patient groups represent more than 50% of UICC’s members.

The membership also includes global patient coalitions, which include both non-cancer specific organisations such as the International Alliance of Patient Organisations (IAPO) and cancer specific organisations such as the World Ovarian Cancer Coalition, the World Bladder Cancer Coalition, the Lymphoma Coalition, the International Kidney Cancer Coalition, all of them working together as umbrella Coalitions.

With such a significant representation of patient organisations, UICC is committed to offer platforms and adapted support responding to the needs of its constituency, particularly from low- and middle-income countries. From an opportunity to engage on the occasion of World Cancer Day to a dedicated track at the World Cancer Congress on ‘People living with Cancer’, patients’ voices through UICC members are at the heart of all UICC’s actions directed towards ensuring better access to quality care.

UICC’s actions in Patient Engagement

As people-centred approaches are a critical prerequisite for quality cancer services, UICC has progressively developed a number of activities dedicated to patient groups, including for patient representatives as well as organisations with dedicated staff or led by volunteers, offering

• Accredited Master course on multisectoral approaches for patient engagement (now available as a self-guided)
• Accredited Master course on raising the voices of patient advocates (now available as self-guided)
• Regional Patient Group Mentoring programme in Asia-Pacific and Eastern Mediterranean