The power of the patient voice: How people affected by cancer are helping to shape care in the Eastern Mediterranean

In 2019, Ikram Eseghir’s life in Kenitra, Morocco, as a secondary-school English teacher and volunteer working with adolescents and children, was turned upside down by a breast cancer diagnosis. As she began treatment, she encountered complex medical language, limited psychosocial support, and few places to find clear, trustworthy guidance for what to expect beyond therapy.

She also saw others facing the same uncertainty. “I realised that if I was struggling, then others with fewer resources or less education were likely to face even greater challenges and fears,” said Eseghir in a discussion with UICC. “Some became influenced by misinformation and turned to unproven remedies such as herbal cures, or even stopped treatment. I also realised that people with strong family support felt better emotionally and physically during treatment, while those without often struggled more.”

Eseghir spoke with her oncologist about how people living with cancer could be safely supported, and while undergoing chemotherapy, she set up with the help of other patients a WhatsApp group where people could share questions and get reliable guidance, with medical questions referred to doctors. By the time she was receiving radiotherapy she had recruited volunteers and started formalising the effort by registering as an association in January 2022.

What began as a small peer-support WhatsApp group had become NABD-BC2 – Best Care for Breast Cancer, providing psychosocial support and advocating for the rights and inclusion of people affected by cancer (including people living with cancer, survivors, and caregivers) in healthcare policy.

The organisation joined UICC in 2023 and has since expanded its network and further engaged in national and regionally advocacy efforts, supported by opportunities offered through UICC’s Patient Group Mentoring Programme.

Early efforts to engage authorities were not straightforward. “People with lived experience were seen as passive recipients of care,” said Eseghir. “Some questioned whether we were the ‘right patients’ for technical discussions, since we may not have been so comfortable with protocol, policy drafting and language.”

Ikram Eseghir chose to strengthen her credentials, completing online courses and a university diploma as a patient partner in oncology. “Speaking at a session of the National Comprehensive Cancer Network, and later at UICC’s World Cancer Congress, helped validate the mix of expertise that comes with the lived experience of cancer and technical literacy. It also opened doors with the Ministry of Health’s cancer prevention and control unit.”

From peer support to policy influence

In 2024, NABD-BC2 became a key partner in a World Health Organization (WHO) Eastern Mediterranean Region (EMRO) pilot project to implement the WHO Framework for Meaningful Engagement of People Living with Noncommunicable Diseases and Mental Health Conditions.

Officially launched in May 2023, the framework aims to ensure that lived experience expertise is integrated at every stage of a country’s health planning, implementation, and review of policies addressing their disease.

It is based on five core principles of dignity and respect; power and equity; inclusivity and intersectionality; commitment and transparency; and embedding engagement into organisations and adapting it to local contexts.

It also identifies six key enablers – sustainable financing, redistributing power, eliminating stigma, integrated approaches, capacity building, and ‘institutionalising’ or formalising engagement – that create the conditions for the effective participation of people with lived experience.

“The Eastern Mediterranean Region is the first WHO region to work on this framework through country pilot projects,” said Dr Heba Alsawahli, Consultant for Noncommunicable Diseases at WHO EMRO. “Too often, people living with cancer are not included in the design of the services that are meant to support them. This pilot aims to show that engagement is essential to improving the quality, efficiency, and relevance of cancer care strategies.”

In November 2024, Morocco held its first national workshop on meaningful engagement. Organised jointly by the Ministry of Health and WHO, the event brought together people with lived experience, cancer organisations, clinicians, researchers, and policymakers to identify actionable priorities and align them with the country’s cancer strategy.

“For the first time, we were given the opportunity to talk – and they were listening to us,” said Ikram Eseghir. “There was an attempt to select at least one patient organisation from every region, and we had two presentations from people with lived experience who were not affiliated to any organisation… Then we worked in mixed groups to work on how to adapt the WHO framework to the Moroccan context.”

Participants agreed on three immediate priorities that were feasible in Morocco: a national mapping of cancer organisations to make support visible and accessible; capacity building, including patient navigation and people-centred therapeutic education to empower individuals in managing their disease; and reducing stigma through public awareness.

NABD-BC2 proposed an innovative project of mapping cancer organisations into a cartography to cancer organisations in Morocco – who they are, where they work, and what services they offer, including psychosocial support, peer groups, patient navigation, accommodation and transport assistance, health awareness, therapeutic education, and advocacy.

The objective is to make support, referrals, collaboration, and consultation easier. “This means not only helping people living with cancer and their families find what they need, but also helping health practitioners and the Ministry of Health gain a clearer view of which groups are operating in which fields,” said Eseghir. “We also proposed a digital platform listing organisation, with profiles, contacts, and services, and space for people to connect and organise training sessions and webinars.”

The platform is being built as a national registry that organisations can update, providing a single point of contact for people seeking support, and for government teams and hospitals looking to identify community-based partners for future collaboration.

Embedding engagement into systems

The pilot project seeks to address another long-standing gap: underrepresentation of the Eastern Mediterranean Region in global advocacy and policy development. According to Dr Alsawahli, voices from the region – particularly women, displaced people, and those affected by conflict – have historically been missing from consultations and global platforms.

As the pilot expands, WHO EMRO is using insights from Morocco to inform similar initiatives in other countries, including Jordan. Each country is encouraged to adapt the WHO framework to its own priorities, capacities, and social context.

“Many people in the region face not only systemic barriers, but also deep social and cultural stigma,” she said. “In some communities, a cancer diagnosis can affect marriage prospects or family status. These are not just medical issues, they are social ones. You cannot address them without listening to the people affected.”

Both Eseghir and Dr Alsawahli agree that the goal is not occasional participation, but sustained, institutionalised collaboration. The WHO EMRO team has worked with national stakeholders to integrate engagement indicators into monitoring frameworks, ensuring that ministries are held accountable for including people with lived experience in ongoing decision-making.

As an example, Eseghir cites how advocacy efforts by patient groups, supported by parliamentary deputy Latifa Cherif, a person with lived experience and President of the association ‘Les Amis du Ruban Rose’ (Friends of the Pink Ribbon), led to the extension of paid medical leave for some people living with cancer from three to five years .

Eseghir also mentioned that a parliamentary oral question to the Ministry of Health – raised during a formal session – helped trigger the adoption of HPV vaccination for adolescent girls to protect against cervical cancer.

“Engagement must be part of the system, not just a one-off workshop,” said Dr Alsawahli.

“People living with cancer know what’s missing,” Eseghir emphasised. “We are ready to help improve the system, we just need to be invited in.”