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Co-creating cancer priorities with those affected by cancer [1]
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Date: 2024-11
People centred cancer care can be achieved by ensuring emergent leaders with lived experience of cancer have the opportunities and the capacities to inform priority setting, policy design and health service planning. Dr Guy Fones / Director a.i., NCD Department, World Health Organization
The importance of including people with lived experience of cancer and those who support and care for people with cancer in the design of health policies has long been understood by the World Health Organization (WHO). It forms the cornerstone of WHO’s Framework for meaningful engagement of people living with noncommunicable diseases, mental health and neurological diseases. Yet how can it be successfully implemented? The obvious answer is to co-create implementation priorities bringing together people with lived experience of cancer alongside those who have platforms or power to influence change. This is why WHO hosted an event “Co-creating priorities for Cancer 2030 with people affected by cancer” at the 2024 World Cancer Congress.
The Union for International Cancer Control organizes the World Cancer Congress every 2 years to facilitate connections amongst international cancer control collaborators and global leaders and this year nearly 2000 participants from more than 120 countries participated. Within the World Cancer Congress, WHO hosted a meeting between 120 people with lived experiences and emergent leaders in cancer care. The goal was to co-develop cancer priorities and harness leadership skills in using WHO’s approach to meaningful engagement.
Karen Nakawala Chilowa, Zambian Cervical Cancer Survivor and Activist, World Cancer Congress, Geneva, Switzerland, September 2024.
Photo credit: WHO / Pierre Albouy
..the World Cancer Congress is working to bring people with lived experience, to be a part of something international like the meaningful symposium, which means that our voices were heard….people with lived experience had long asked to be an active part of policy making, rather than have others speak on their behalf, they wanted, and policy needed, their direct input. Eman Shannan / AHP Founder and cancer survivor, Gaza, occupied Palestinian territory
People with lived experience are individuals or communities with first-hand experience of cancer. It includes those who have recovered and those currently undergoing treatment. Eman Shannan is one such person. She survived breast cancer and is the founder and general manager for the nongovernmental organization (NGO) Aid and Hope Program for Cancer Patients Care (AHP), supporting cancer patients care in Gaza, occupied Palestinian territory.
Eman participated in the meeting and experienced first-hand the diplomatic deliberations between delegates from all around the world, as part of the WHO’s effort to increase participants ability to negotiate and lead national or global policy discussions. Participants were divided into 3 core groups each focused on defining specific priorities for governments, WHO and the broader development community. Preparation for the event was intense with groups coming together online twice prior to the main event, to develop their statements of priorities and where they additionally received WHO support towards a better understanding of the principles of meaningful engagement. At the main in-person event in Geneva, their formal representation was integrated into the proceeding, with a delegation from WHO on hand to make sure procedures were understood and navigated.
Eman Shannan speaking at the Aid and Hope Gala Dinner, Gaza, occupied Palestinian territory, October 2022.
Photo credit: Rushdi Al-Sarraj, 2022, occupied Palestinian territory
I was grateful that I will have the chance...as a Palestinian from Gaza...to be part of this important committee...when I had cancer and survived, I thought that the worst...that the battle was cancer, but no, what happened in Gaza was the worst nightmare...It is was not possible (that this is)... real life...so many cancer survivors cannot speak, so many do not have access to treatment. Eman Shannan / AHP Founder and cancer survivor, Gaza, occupied Palestinian territory
After careful deliberations, a draft joint statement of priorities was issued for each of the 3 thematic areas. Priorities for WHO included amongst many others, a request to produce frameworks, guidance and toolkits for national stakeholders and community leaders to better and more meaningfully engage people with lived experience in the design, implementation, and monitoring of cancer care programmes. At the close of the meeting the participants resolved to continue the deliberation process outside of the meeting with the final statements due to be completed in the upcoming months, leading into the Fourth UN High-level Meeting on Noncommunicable Diseases. The group also concluded that a World Health Assembly resolution on the meaningful engagement of people with lived experience of cancer would secure the political action needed to implement the stated priorities and existing frameworks.In 2022, WHO launched the global campaign to amplify the voices of those affected by cancer as part of the WHO framework for meaningful engagement of people living with noncommunicable diseases. This campaign aims to ensure the inclusion of the needs and expectations of people and communities impacted by cancer by including the people impacted by cancer.
For people like Eman, the opportunity to speak from experience was vital in connecting all aspect of having cancer from managing the disease to the impact on mental stress, costs and challenges of receiving treatment and, in her case, conflict.
Despite significant progress in the development and implementation of national cancer control plans, gaps remain in a full health systems response for the prevention and control of all people affected by cancer and particularly those who are vulnerable. The inclusion of patient and caregiver experiences will go a long way to filling these gaps.
For WHO, this meeting is an important milestone in its commitment to advance meaningful engagement of people with lived experience of cancer in all programmes and policies.
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[1] Url:
https://www.who.int/news-room/feature-stories/detail/co-creating-cancer-priorities-with-those-affected-by-cancer
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