Patient testimony in the regulatory process expands in the second half of this decade and the Food and Drug Administration (FDA)Food and Drug Administration’s (FDA) evaluation of new medicines (United States). During clinical trials, researchers study whether new medicines are safe and effective for patients and whether the medicine’s benefits outweigh the risks.
and the European Medicines Agency (EMA) EMA is a decentralized agency of the European Union (EU) responsible for the scientific evaluation, supervision, and safety monitoring of medicines in the EU join forces!

In addition to the European Medicines Agency EMA recently revising their original framework for interaction between the agency and patients and consumers and their organizations (2014) (download pdf):

CoPI: Regulatory reviewers, working groups, advisory panels, Patient Preference Information (PPI)

Tools: Frameworks – regulatory; Guidance Documents – patient engagement

Context: Regulatory process, clinical trials, Research & Development, health technology assessment (HTA), decision aids, young adults