For the first time under the auspices of CIOMS patient representatives, medicines regulators and the pharmaceutical industry have come together in a global forum to discuss how patients can have their say during the entire life cycle of medicines, from discovery through post-market surveillance and risk management. On 30 April 2019 the Council for International Organizations of Medical Sciences (CIOMS) hosted an Open Meeting to seek public input to the guidance being developed by its Working Group on Patient Involvement in development and safe use of medicines.

“Patients know first-hand what the impact of medicines are on their quality of life”, said Marc Boutin, JD, CEO of the U.S. National Health Council, which provides a united voice for people with chronic diseases and disabilities and their family caregivers. “Patient engagement has really caught fire, and the health ecosystem is shifting to become more patient-centered. Those that develop and deliver treatments are realizing that they must listen to the end users, the patients and family caregivers, to understand what the outcomes are that are most important to them.”