This article by EUPATI fellow and lung health advocate Dominique Hamerlijnck discusses the significance of patient involvement in clinical research and development from the patients’ perspective, and how emerging patient movements focussing on education and the sharing of knowledge can contribute to the quality, speed and acceptability of biomedical research.
“Currently, the level of patient involvement differs immensely between different clinical trials and there are no standards on best practice for patient involvement. In my opinion, patients should be involved from the very start as equal partners, although others are hesitant and want to keep the patients at arm’s length. The ways in which a patient can be involved in a trial are illustrated in figure 1, where the balance in exchange of information is indicated by the size of the arrows (from unequal relationships to more equal, such as co-creation with patients as members of the research team).”
Read the full article here: 2017 09 ERS RED-Hamerlijnck_ The importance of patient involvement in clinical trials