Traditional Patient and Public Engagement (PPE) is, seemingly, committed to a top-down method of engaging patients, a narrow focus on service user experience, and, ultimately, distances patients and carers from decision-making. Throughout the decades-long patient engagement industry, energies have been overwhelmingly directed towards data gathering and capturing views of ‘representative’ groups – where patients are invited to complete questionnaires, participate in focus groups, or lend their story for board meetings – and away from valuing the wider expertise and wisdom of patients and carers. This cloistered vision has led to an inauthentic engagement in the extreme.
The Patient Leadership Triangle confronts this dramatic underemphasis on valuing patients and carers. Providing a practical engagement model, David Gilbert moves beyond the tick-the-box, patient feedback and representational approaches that serve to maintain status quo and preserve institutional authority. For Gilbert, the demarcation of an ‘us and them’ mode is not only unwise, but, in the failure of shared decision-making, perpetuates an immature engagement dynamic – that is, either a condescending paternalism, (“structured dependency”) or combative adolescent-parent style engagement. This shiftless model requires an overhaul. As Gilbert writes, “If we are serious about partnership, then we need to overhaul the engagement industry.”