Beyond rhetoric: we need a strategy for patient involvement in the health service

Respect for a patient’s individual autonomy is an accepted principle in modern medicine. In the past half century, the concept of autonomy has usurped medical paternalism in almost all of its forms and has aspired to promote patients from passive recipients of care to partners in planning their own treatment.1 Now the concept has extended beyond individual autonomy to an expectation of empowerment at the population level.

The notion of patient empowerment is reflected in the development of regulation and guidance, and phrases such as “patient led care,” “putting patients at the heart of the NHS,” and “shared treatment decision making” abound. Since the NHS Plan in 2000, the UK government has promised to “encourage the involvement of citizens in redesigning the health service from the patients’ point of view.”2

Despite the strong rhetoric, however, there has been no consistent strategy for involving patients. The approach to enabling patients and the general public to have more say about how services are planned and …