It’s not that long ago that this question would have been seen as a very shallow one indeed. As recently as 1999 Angela Coulter, writing in the BMJ, described an ‘endemic paternalism’ in the NHS that, whilst “benign and well intentioned”, led to an unhealthily dependent relationship between patients and professionals. At best, patients were there to be treated, cured – “done to”. At worst, the primary focus would be on the disease rather than the person who had it. The scope for people’s voices to be heard could be very narrow: to quote the philosopher Havi Carel, “in paternalistic medicine patients might not be regarded as epistemic contributors… in anything except the thinnest manner (eg ‘where it hurts’)”.
In the last twenty to thirty years, things have changed. Policy makers and professionals in developed countries around the world have embraced the idea of ‘person centred care’ and have sought to step away from the vestiges of paternalism. In England, for example, this is exemplified by the focus on person centred care in the NHS Long Term Plan, which calls for “a fundamental shift in how we work alongside patients to deliver more person-centred care”.
What does person centred care mean for the role of patients? Fundamentally, it is an ethos that is intended to put users at the heart of services; encouraging a view of them as participants, not patients; active, not passive. This thinking should apply both to people accessing services as individuals and to citizens collectively – and that means the role of patients, and of their voice, is multiple.
In person centred care, then, patients and the public have at least three hats: that of the beneficiary, the informant, and the partner. Providers and commissioners of health and care have a role in enabling people to wear each of these – and it’s by actively promoting person centredness in each of these roles that we can make best use of the voice of patients.
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