The Life Raft Group is proud to share our American Society of Clinical Oncology (ASCO) Educational Book Manuscript – “Leveraging Patient Engagement Through Collaboration for Improved Global Health Outcomes in Sarcoma”.
This article explores the impact of patient engagement and collaboration in improving global health outcomes for sarcoma patients. It highlights the pivotal role of patient advocacy groups like The Life Raft Group and SELNET in driving research, fostering partnerships with the medical community, and empowering patients. By leveraging real-world data, tissue, and collaborative efforts, we are able to shape innovations and revolutionize sarcoma research, ultimately overcoming the unique challenges faced in sarcoma care and improving patient outcomes.
Abstract
In the dynamic landscape of oncology, collaborative efforts between the medical community and patient advocacy groups are pivotal in shaping standards of care and advancing research. Nowhere is this collaboration more evident than in sarcoma, a group of rare cancers posing unique challenges to diagnosis, management, and treatment, which profoundly affect patient outcomes. Here, we explore the vital role of patient-centric collaboration in improving global health outcomes in sarcoma, emphasizing the transformative power of collective action and shared expertise. Challenges in sarcoma care, including diagnostic complexities, disparities in access to care, and genomic tumor heterogeneity, underscore the urgent need for collaborative solutions. Initiatives like the Sarcoma European and Latin American Network (SELNET) and The Life Raft Group (LRG) exemplify successful models of collaborative research and patient advocacy, driving advancements in diagnosis, treatment, and disease understanding. Stakeholders across disciplines are uniting to improve sarcoma care and outcomes through the development of clinical practice guidelines, continuous medical education, patient registries, virtual tumor boards, and consortium-driven research endeavors, all of which foster the growth of global collaborative groups. The success of these collaborative efforts serves as a model for other rare diseases, highlighting the potential of collective action to drive progress and innovation in health care.
LRG Senior Director of Data Management & Research Denisse Evans had the opportunity at the ASCO24 Annual Meeting to present the information in this paper to one of the largest gatherings of oncology and industry professionals, and other patient advocacy groups. This session featured distinguished speakers, including Dr. Matías Chacón, Head of Medical Oncology at the Alexander Fleming Institute in Argentina & the SELNET Project, and Lynne Hernandez, Executive Director of the Desmoid Tumor Research Foundation.
The presentation stressed the vital need to integrate medical and patient perspectives in research. Placing patient experiences at the forefront ensures that research addresses real needs, bridging the gap between clinical studies and patient care for a more responsive healthcare system. This holistic approach doesn’t just advance scientific knowledge but directly improves patients’ lives. Denisse highlighted LRG’s research achievements and its role in mentoring other disease spaces, leveraging success to enhance more patients’ lives.
The LRG’s mission is to accelerate research and unite forces with multiple stakeholders by placing the patient at the center of all decisions. This patient-centered approach ensures that research priorities are not solely dictated by academic or industrial interests but are directly aligned with the actual needs and experiences of those affected by diseases. By doing so, the LRG aims to create a more effective and responsive research environment, ultimately leading to better outcomes for patients. The collaboration with various stakeholders, including medical professionals, researchers, and patient advocacy groups, underscores the LRG’s commitment to fostering a holistic and inclusive research community.
The presentation at ASCO24 was met with enthusiasm and high engagement from the audience. Attendees, including leading oncology experts, patient advocates, and industry professionals, posed numerous questions, and provided positive feedback, highlighting the session’s impact and relevance. The active participation and interest from the audience demonstrate a collective recognition of the importance of integrating patient perspectives into research and the potential this approach has to drive significant advancements in oncology.
This significant accomplishment is owed to our patients and caregivers, who continue to support us and believe in our mission. Their unwavering dedication inspires and drives us to advance our efforts in making impactful contributions to the field of oncology research. It is their stories, their courage, and their continuous support that fuel our commitment to place the patient at the heart of every decision we make. By championing their needs and perspectives, we are not only honoring their contributions but also paving the way for more patient-focused and effective research outcomes in the future.
