• Idiopathic pulmonary fibrosis

Over the last century, the doctor–patient relationship has gradually evolved from a paternalistic to a more patient-centred approach, with a marked change in the last 20 years. This cultural shift is reflected in health research, where patients and the public have become increasingly engaged and empowered. The UK pioneered these changes, with patient and public involvement becoming, in 2006, a founding principle of the National Institute of Health Research (NIHR). The NIHR aims ‘to conduct leading edge research focussing on the needs of patients and the public’, with research being undertaken with or by members of the public, rather than on or to them.1 A basic premise is that involving lay people and bringing in different perspectives and experiences can improve research quality, while also empowering patients to influence change on issues they consider important. There are many different frameworks but one of the most useful is described by NIHR INVOLVE, the English national advisory group on public involvement, shown in table 1.2

Some other frameworks consider ‘coproduction’ as the highest level, which means collaboration of researchers and patients throughout the research process—design, implementation and dissemination. A systematic review of patient and public involvement in Europe found more examples of …