Building Advocacy into Research

The roles of patients and advocates in research, both basic and clinical, go well beyond simply increasing the number of participants or samples in a study. Patient and advocate voices are critical for helping to set research priorities, address ethical concerns, influence decisions in funding, legislation and policy, promote health equity and bring attention to the burdens faced by patients and their families. Their passion, commitment and sense of urgency can be a powerful motivator and source of inspiration for research groups, as well as providing unique perspectives. It is our hope this series will provide patients and researchers alike with a set of roadmaps for how to build strong, ongoing partnerships, supporting the highest quality research for the benefit of all patients affected by disease.