‘Patient-centred care’ is a term often used in relation to health care policy and delivery, and it might be assumed that the patient perspective is an integral part of the decisions made by policy makers and health care providers. It might also be assumed that processes such as health technology assessments have mechanisms embedded in their methodology to faithfully capture what it means to live with an illness and the potential benefits (and risks) a new technology will bring to the people likely to use it. Although there are many good reasons to involve patients in decisions – from the personal to the policy level – many issues must be resolved before health care truly delivers ‘nothing about me without me’ to patients.