Involving patients in clinical research

Education and debate p 774 Traditionally, patients have been involved in research as “subjects,” or even “objects,” but definitely not as colleagues. In 1995 the BMJ argued that “patients should help to decide which research is conducted, help to plan the research and interpret the data, and hear the results before anybody else.”1 How far have we come in the past four years in realising these hopes? We need to recognise that patients (participants, users, consumers, what you will)2 3 have the experience and skills that complement those of researchers. They know what it feels like to suffer a particular disease and to undergo the treatments with their various side effects. They will have a good idea of which research questions are worth asking, and when a question should be framed differently.4 For instance, researchers at Mount Vernon Hospital hypothesised that moving follow up breast cancer clinics to primary care might relieve the burden on hospital outpatient clinics. After consulting women with experience of the problem, however, the protocol was redesigned to address the issue of easier access to specialists.5 Some progress has certainly been made in the …