Reimagining Patient Advocacy—Voices, Contexts, and Pathways to Cancer Equity
Runcie C.W. Chidebe and Lydia Makaroff, Guest Editors
In recent years, global attention to patient rights and empowerment has grown substantially, placing patient advocacy at the heart of discussions around quality cancer care. Yet, this special issue of ecancermedicalscience reveals that “advocacy” is not a fixed or uniform concept—it is culturally embedded, context-sensitive, and continuously evolving. From Gaza to Nigeria, from youth groups in Africa to ethnically diverse communities in the UK and Egypt, this issue explores how individuals affected by cancer are actively reshaping healthcare systems through their voices, lived experiences, and resilience.
In Africa, Nwozichi et al. examine the unique barriers faced by adolescents and young adults (AYAs) with cancer—ranging from limited access to tailored services and stigmatization, to systemic underrepresentation in clinical research [1]. Despite these challenges, AYAs emerge as powerful agents of change, driving peer support networks, educational outreach, and health policy shifts across the continent.
Complementing this, the study led by Nduka et al. explores how breast cancer survivorship in Nigeria can inform stronger advocacy strategies. Participants speak candidly about poor communication in care settings, late diagnosis, financial hardship, and social stigma—all of which reinforce the urgent need for a patient-informed advocacy model that addresses systemic and cultural barriers [2].
In Gaza, AlWaheidi et al. present a compelling qualitative study revealing the emotional, clinical, and geopolitical challenges faced by women with breast cancer. Beyond healthcare access and delays in treatment, these women articulate deep concerns about modesty, fear, stigma, and disrupted family dynamics—issues that demand a patient advocacy framework rooted in dignity and human rights [3].
From a research equity perspective, the UK-based Diverse PPI initiative—described by Van Hemelrijck and colleagues—offers a bold example of how inclusive, culturally competent engagement can address underrepresentation in clinical research. By fostering trust, representation, and education, their work underscores that patient participation must go beyond tokenism and into shared ownership of research agendas [4].
Finally, in Egypt, Hammad et al. demonstrate the transformative power of community engagement in increasing bladder cancer awareness. Through in-person outreach and online campaigns, their team not only improved public knowledge but also revealed persistent gaps among medical students, emphasizing the need for multi-pronged advocacy strategies in low-resource settings [5].
As guest editors, we believe this special issue marks a turning point in how patient advocacy is understood and enacted. The patient is not a passive recipient of care, but a central figure in shaping policy, research, and service delivery. We celebrate the breadth of voices and the depth of insights shared here, and we hope these contributions will inspire further actions toward more inclusive, equitable, and patient-centered cancer care.
References
Chidebe RCW, et al. Cancer Advocacy, Barriers and Associated Factors Among Adolescents and Young Adults with Cancer in Africa. ecancermedicalscience. 2024.
Nduka CC, et al. Using Cancer Survivorship Experiences to Inform Cancer Advocacy in Nigeria. ecancermedicalscience. 2024.
AlWaheidi S, et al. Breast cancer in women in Gaza: Qualitative study of women’s expectations and experiences of diagnosis and management. ecancermedicalscience. 2024.
Van Hemelrijck M, Green S, et al. The Patient and Public Involvement Cancer Research Group for Diverse Backgrounds (Diverse PPI): doing better together. ecancermedicalscience. 2024.
Hammad AA, et al. Enhancing Bladder Cancer Awareness and Knowledge through Multifaceted Community Engagement in Egypt. ecancermedicalscience. 2024.
