The Background of Patient Involvement
In the literature we find user involvement, patient involvement, patient participation and patient and public involvement as means to explain the different processes in which patient are being involved in health research. In clinical research however patient participation is used as the participation of a patient as study object in an experiment of a clinical trial. To avoid confusion about the meaning of patient participation as a general term and the specific form of patient participation as it is used in clinical trials we will use the term patient involvement meaning the term that described the ways in which individual patients or patient organisations are involved in the different phases of a clinical trial. In 1969, Arnstein (1) was the first to describe the participation of the public in policy using the public participation ladder. She has argued that true involvement can only be reached when both involved parties are obligated to make use of the information that has been supplied to them. Others (2, 3) have since then suggested a patient participation ladder where true patient involvement takes places in the higher levels of interaction between patients and other stakeholders e.g. as a PatientPartner.