Brain tumor patients’ rights and the power of patient advocacy: The current international landscape

• Published in: Neuro-oncology practice 2024-11
• Main Authors: Oliver, Kathy, Granero, Anita, Berankova, Anna, Miller, Cameron, Hindson, Catherine, La Haye, Charles, Tse, Chris, Mungoshi, Christine, Leach, Danielle, Arons, David, Keegan, Fiona, Bulbeck, Helen, Adams, Hugh, Dirksje Boer, Jolijn, Wallgren, Kimberly, Syed, Komal, Hynes, Laura, Gatellier, Laureline, Magiera, Magdalena, Lim, Melissa, Campbell, Mikki, Willmarth, Nicole, Garg, Nitin, Riis Olsen, Pia, Rogers, Sarah, Gupta, Tejpal, Mitchell Skinner, Tina, Moue, Yuko
• Format: Article
• Language: English
• ISSN: 2054-2577; 2054-2585
• DOI: 10.1093/nop/npae079

Across the globe, significant inequities in brain tumor treatment, care, and support perpetuate. Identifying and addressing these unmet needs in the context of patients’ rights is crucial to reducing inequalities and improving outcomes for people living with brain tumors. Brain tumor patient advocacy addresses and influences gaps in healthcare provision, ensuring optimal treatment, care, and support for patients, their caregivers, and families. Therefore, the purpose of this review is to highlight the variety of challenges faced by brain tumor patients, caregivers, and advocates in various parts of the world and set a benchmark for improvements. Twenty-eight leading brain tumor patient/caregiver advocates from 18 countries in Asia Pacific, Sub-Saharan Africa, North America, Eastern Europe, and Western Europe collaborated to explore unmet and met needs in their countries. Virtual meetings were held with the 5 geographic groupings. Through a process of discussion based on a combination of patient advocates’ informed expert opinion, published references, a survey (Asia Pacific) and the informal completion of a matrix of challenges by some of the advocacy organizations involved, agreement within the groupings was also reached regarding what rights within The Brain Tumor Patients’ Charter of Rights they felt were being met and where there are still gaps. Acknowledging that some rights in The Brain Tumor Patients’ Charter of Rights are aspirational, there still remain many areas of the world where even basic patient rights are not yet attainable. Patient advocacy organizations stand ready to help change this to achieve the best possible health and quality of life outcomes for adults and children living with brain tumors.