Setting the international research agenda for sarcomas with patients and carers: results of phase II of the Sarcoma Patient Advocacy Global Network (SPAGN) priority setting partnership.

Background: Typically, researchers and clinicians determine the agenda in sarcoma research. However, patient involvement can have a meaningful impact on research. Therefore, the Patient-Powered Research Network (PPRN) of the Sarcoma Patient Advocacy Global Network (SPAGN) set up a Priority Setting Partnership (PSP).

What Is a Sarcoma 'Specialist Center'? Multidisciplinary Research Finds an Answer.

The management of sarcomas in specialist centers delivers significant benefits. In much of the world, specialists are not available, and the development of expertise is identified as a major need. However, the terms 'specialist' or 'expert' center are rarely defined.

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.

Setting the international research agenda for sarcoma together with patients and carers: first results of the Sarcoma Patient EuroNet (SPAEN) priority setting partnership.

Background: Research in sarcomas has historically been the domain of scientists and clinicians attempting to understand the disease to develop effective treatments. This traditional approach of placing scientific rigor before the patient's reality is changing. This evolution is reflected in the growth of patient-centered organizations and patient advocacy groups that seek to meaningfully integrate patients into the research process.

Second medical opinion in oncological setting.

Oncological patients increasingly require second medical opinions to feel more likely confident with their oncologists and treatments, although this could lead to wrong opinions and delay in the start of treatments. Second opinions can be required also by physicians to obtain advices, especially in case of rare tumors. The request of new opinions is documented in radiology and pathology settings too, with not negligible discrepancy rate.