THE ROLE OF PATIENT VALUE AND PATIENT-CENTRED
CARE IN HEALTH SYSTEMSengagement will be easier because patients will see that their views have an effect. This will allow
all patients, their communities, and representative groups to make clear what they really need and
contribute to making it happen. In most situations, this will involve clinicians actively encouraging
patients into partnership rather than having such a relationship foisted on them by advocates. In some
cases, it will also require taking the initiative to make the tools and processes discussed above, such as
decision aids and shared decision-making, far more widespread. Waiting for those affected by each
disease, in turn, to seize a seat at the table will delay change indefinitely.
The collective benefit, notes Ms Sofia, is a more profound understanding for all of what is needed in the
common endeavour to address illnesses. “Patients,” she says, “offer a perspective that is unique: what it
is like to live with the disease. Nobody else can bring it, even [the] most experienced doctor. I hope that
people living with epilepsy will take on the challenge and responsibility.”