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

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). •The main role of Patient Advocates (PAs) is that of ensuring both patient perspective and rights, providing insights and offering valid inputs in all crucial areas.•Healthcare organization, clinical care, research, timely access to treatments are the main challenges to be faced in order to improve sarcoma patient treatments.•Putting PROMs on “centre stage” in research and care could allow to build Evidence-Based Advocacy and empower Evidence-Based Medicine.•Partnerships between PAs and professionals are essential to implement patient centered-care, all the more in the challenging scenario of musculoskeletal oncology because of the rarity of bone and skeletal soft tissue sarcomas.