Patients and patient advocates may be in the best position to express what patients want and need. However, individual opinions are not always the most effective to convince researchers, healthcare providers, or regulatory decision-makers. In order to help healthcare to focus on the true needs of patients and their subpopulations, patient advocates should generate robust evidence and publish it.
“Evidence-Based Patient Advocacy” means advocating in a targeted, scientific, well-educated, and professional manner to measure the impact of advocacy work. It is based on three core elements: targeted advocacy towards each respective stakeholder, use of robust data about patients’ needs and preferences, and use of the right packaging of messages to communicate the needs to the respective target group.