Harnessing lived experience: the role of cancer patients organizations in shaping access to better health services in Moldova

Abstract

Context. Access to quality healthcare services remains a critical issue for individuals affected by cancer in Moldova, the same as worldwide. Aside from the efforts of national health systems, cancer patient organizations can play an essential role in advocating for improved healthcare policies, concurrently providing direct support to those in need. Understanding the importance of harnessing this experience, WHO developed a framework for the meaningful engagement of people with NCDs, to help co-create and enhance related policies, programs and services. In Moldova, this pathway is followed by ”Viața fără leucemie” (engl. Life Without Leukemia, LWL) an NGO uniting parents of children diagnosed with cancer. Methods. To better understand the needs and challenges of cancer patients, whether children or adults, surveys are the major tool to capture real experiences and firsthand insights from individuals. In this respect, LWL has conducted a survey among the parents of children with cancer from Moldova aiming to better understand the barriers in accessing healthcare services by pediatric cancer patients, while relying on the data communicated by healthcare providers and policymakers during interviews. At a broader level, a global online survey on the lived experience of people affected by cancer was performed by WHO, aiming to identify existing barriers and implementation gaps in provision of integrated, people-centred health services for this population. Results. Findings indicate that cancer has a significant impact on individuals and families, highlighting the psychological, financial, and social challenges they face. Financial burden, access to healthcare, and the need for better psychosocial support are key concerns revealed by the participants both on the global as well as on the national level. On a broader landscape, as an example the report summarizing Romania lived experience of cancer, based on the aforementioned WHO survey, reveals that most participants experienced significant emotional distress and financial strain, with over half reporting the spent at least 50% of their monthly income on healthcare costs, public healthcare services were major concern, with many relying on private care, which is expensive. The findings of the national survey, on the other hand, revealed drawbacks in access to healthcare services by children with cancer in Moldova caused by insufficient institutional collaboration, as well as deconcentration of services as being one of the causes for delayed provision of necessary healthcare. Discussion. The results highlight the transformative potential of incorporating lived experiences in healthcare reform. In this respect, cancer patient organizations can serve as vital agents of change, addressing gaps in the healthcare system through increasing awareness and advocating for more inclusive policies, while facilitating patient support networks. In Moldova, LWL is now included in the Administrative Council of the Oncological Institute, the only state hospital in the country treating patients with cancer. Also, the organization is an active part of the world initiative facilitating the provision of free medication for children with cancer in Moldova. Strengthening partnerships between patient organizations, healthcare providers, and policymakers can lead to a more equitable healthcare environment. Future efforts should focus on increasing institutional support, securing sustainable funding, and promoting greater patient participation in decision-making processes. A patient-centered approach enhances care quality and ensures healthcare systems meet the real needs of those affected by cancer.