Share4Rare toolkit for patient advocacy
Advocacy & research
Why should a patient advocate care about research?
Research is not only essential for progress in medicine (medical research) but covers nearly every other area that affects patients, like healthcare systems research that looks at how healthcare systems work or research in healthcare economics investigating the financial aspects of healthcare.
Supporting advocacy claims with evidence will greatly increase your chances of being heard. You can use evidence published by other trustworthy sources and/or generate evidence yourself. The aim of the S4R platform is to help you generate high-quality evidence to support your advocacy work.
For example, some patient communities have used their powerful networks to drive own research projects, like the CML community that had over 2000 patients participate in an adherence study in 4 months.
Find here a template on How to create evidence-based secondary messages or watch our webinar on How to follow scientific news by Bettina Ryll or How to detect and tackle pseudoscience by Gilliosa Spurrier, from MPNE.