The role of patient advocates and sarcoma community initiatives in musculoskeletal oncology. Moving towards Evidence-Based Advocacy to empower Evidence-Based Medicine

Abstract

Musculoskeletal sarcomas are rare cancers that as the whole family of sarcomas pose several challenges at different levels, ranging from medical knowledge to clinical research and policymaking. Addressing these challenges, necessarily calls for the inclusion of patient perspective inside the decision-making processes of every area that contributes to treatment improvement, from the provision of high-quality services by healthcare organisations to research issues. Without patient-provided inputs to inform decisions, the current paradigm of patient-centred care makes no sense and sounds at the least irrational if not unethical. Putting PROMs on "centre stage" in cancer research and care, could allow to build a truly Evidence Based Advocacy (EBA) and therefore to empower Evidence Based Medicine (EBM).

Keywords: Bone sarcomas; High-quality care and research in sarcomas; Level of Evidence; Musculoskeletal oncology; Patient Reported Outcomes; Patient advocates; Skeletal soft tissue sarcomas.