There is a growing consensus that patients need to be more included in the medical field, reports PCMA Convene.
Over the last ten years increasing numbers of organisations have moved to improve patient involvement in discussions about medicine. In the past, medical conferences have been aimed at doctors, researchers, healthcare providers, and others. The roles of patients, patient representatives, and caregivers have often been overlooked. Increasingly, however, organisers are recognising the value that patients can add to events and are beginning to include them at medical conferences, usually as speakers. Several organisations now emphasise the importance of including patients at their events. One of these, Medicine X, was founded on the belief that healthcare improves most quickly when everybody contributes to the discussion.
Individuals are also working to improve patient involvement. Lucien Engelen, director of the REshape Centre for Health Innovation, attended a conference in Dubai where there wasn’t a single patient present. Following this, Engelen decided to only speak at events that patients attended, and wrote a draft of the “Patients Included” charter, which provides guidelines on how to encourage patient involvement. Similar stories are common. For some, like Engelen and Medicine X, the movement towards patient involvement was fast, but for other organisations, such as the European Lung Foundation (ELF), the process has been gradual. Pippa Powell, director of ELF, says that making sure organisations that represent patients attend the annual conferences is important, because they are then able to return to their communities and share information about new discoveries and upcoming research that patients might not otherwise hear about.