Evidence Based Patient Advocacy

In this lesson, you’ll learn about why and how patient organisations are shifting from relying mainly on personal stories to combining those stories with structured evidence. 

We’ll look at why the traditional advocacy approach is no longer enough, exploring how HTA bodies, industry, clinicians and regulators each ask different questions about a treatment’s real value; and introduce the Evidence-Based Advocacy Model as a way to bring patient experience and data together. You’ll see real examples, including patient preference studies and the European Atlas on Clinical Trials, and walk through the process of generating your own evidence, from defining a research question to presenting the findings. 

By the end, you’ll understand how to strengthen your organisation’s influence by pairing lived experience with credible, methodologically sound evidence, and the common barriers patient organisations face in doing this well.