Patients' preferences do not exactly overlap with good quality care; meeting their priorities is necessary but not sufficient. Indeed, some of their wishes, particularly when uninformed or ill informed, can be detrimental. In many circumstances, rapid access to health care is necessary and important—for example, fast treatment is essential in thrombolysis and early identification and treatment of cervical neoplasia improves prognosis. However, given that access will inevitably be limited in a resource bounded system, it is unrealistic to have a service without limits. We therefore need to influence how patients choose to use health services, especially when treatments are ineffective or potentially harmful. It would be better, for example, if some self limiting illnesses—such as some musculoskeletal problems, many viral infections, and situational reactions to stresses—were less medicalised, with less drug treatment. Strategies to reduce use, such as increased education of doctors and patients or requiring patients to contribute to the cost of treatments that have limited clinical value, are being tested.
When it comes to providing care with respect and ensuring dignity—especially for people who are frail, cognitively impaired, or terminally ill—the perception of the patient or the patient's carer is of uncontested importance. However, respect and dignity are not given sufficient attention. Empowering patients—giving them voice and demonstrating responsiveness—is essential to improving these aspects of care.
Although considerable evidence shows consistently low levels of patient involvement in healthcare processes, patients' understanding of involvement may differ from that of researchers and health professionals.4
Patients' conception of what it means to be involved in their care varies widely—from being made to feel welcome, to being able to share their anxieties, to weighing the pros and cons of treatments. So we might meet some patients' perceptions of involvement without giving them information on treatment options or engaging them in decision making. Nevertheless, not informing patients risks misunderstanding and denies them an active role in self management.
Tension exists about who should have responsibility for decisions—is it the patient alone or is it a negotiated preference?5
Quality measurement must be sensitive to the complexity of tailoring actions to patients' preferences.
Lastly, not all patients are capable of understanding the risks and the benefits of clinical choices. Measurements of quality therefore cannot be limited to data on patient experience, although they should be a central element.