Patient engagement

In recognition of the fact that 40% of UICC members are patient support groups, and given that people-centred approaches are a critical prerequisite for quality cancer services, UICC is continuing to progressively develop a programme of work at the regional and global level to support these organisations.

In the Asia-Pacific and Eastern Mediterranean regions, the Patient Group Mentoring Programme (PGMP) supports 29 organisations by providing one-to-one expert and peer support. Some of these organisations were also selected to receive small project grants to support the development of new activities and extend their impact.

For its global membership, UICC offered a three-month online learning opportunity aimed at encouraging patient organisations to raise their voices and engage in advocacy. For the first time, the World Cancer Congress included a programme track focused on ‘People living with cancer’, with travel grants provided to support the attendance of individuals from patient groups, many of whom doing so as speakers.

An article published in the Journal of Clinical Oncology: Global Oncology in December 2022, co-authored by Mélanie Samson (UICC) and two participants in the PGMP, Maria Fatima Garcia-Lorenzo and Carol El Jabari, highlighted the importance of engaging people living with cancer to drive equitable access to cancer services.

“UICC encourages us to see beyond the scope of national to regional and global and to make the patients voice stronger.”

Khin Thiri, Pun Yaung Hnin Si (Pink Rose) Breast Cancer Patients Support Group, Myanmar

The Society for Cancer Advocacy & Awareness Kuching (SCAN), based in the Sarawak region of Malaysia, seeks to provide a voice for cancer patients in this remote state within the Borneo island. The organisation was founded in 2017 and is led by its President and a cancer survivor, Chris Cheng. SCAN has leveraged its UICC membership from the outset to impact cancer control locally and nationally, and is one of the most engaged UICC member organisations in the region.

The organisation first participated in the AsiaPacific Patient Group Mentoring Programme, then took advantage of UICC’s online learning offer, with five of SCAN’s volunteers completing a total of 15 courses and gaining 57 CME points in the process, demonstrating their commitment to improving their skills and professionalising the organisation.

A SCAN volunteer and Committee member, Melissa Lim Siaw Han, was selected as a UICC Young Leader 2021-2022.

At the World Cancer Congress 2022, she presented the outreach work that SCAN is carrying out with the multi-ethnic rural communities of Borneo.

A grant awarded through UICC’s Breast Cancer Programme enabled SCAN to help raise awareness of breast cancer in rural Malaysia and promote early detection. The project was selected in part because of its focus on addressing inequities in accessing health care.

SCAN also leveraged World Cancer Day 2022 to highlight the inequities that exist between rural and urban areas and received financial support from the Patient Group Mentoring Programme to record a song and music video with a singer songwriter, Alena Murang, called ‘Many tomorrows’, which was featured in the World Cancer Day live programme.

SCAN is becoming a prominent advocate for cancer awareness and advocacy, notably creating a network of patient groups and spearheading a campaign to secure federal commitment for a new cancer centre in the region. The organisation is an excellent example of the importance of the significant impact a small patient-led organisation can have when combining passion and local knowledge with international engagement.

“SCAN greatly appreciates the significant support provided by UICC, which has helped us tremendously in terms of exposure and training. The Master courses offered by UICC have been particularly beneficial, as they have enabled us to acquire new skills and enhance our advocacy capabilities. This has been reflected in our interactions with the media and government. Additionally, UICC's financial assistance through grants has enabled us to undertake larger awareness projects and expand our outreach to rural areas, resulting in direct benefits for the local population.”

Chris Cheng, President, Society of Cancer Advocacy & Awareness Kuching (SCAN)