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Abstract

NHS England commissioned the project described in this article to explore how patients and carers can, acting as leaders, make a real difference in improving experience of care. The work was carried out on a collaborative basis, co-designing the scope of the research with patient leaders and commissioners. We gathered case examples across England that had involved patient leaders in using patient and carer feedback to improve experience of care. A Patient Leaders Expert Advisory Group selected four case examples that were visited to undertake a more detailed study and subsequently discussed and agreed the key learning points and conclusions. The Advisory Group chair provided a patient leader view on the project. The main learning points were that in order for patient leadership to have a significant impact on improving experience of care, health organisations should invest in patient leaders, put robust feedback mechanisms in place and develop the culture and systems to act on feedback. Our findings identified ten building blocks that provide a basis for success, including a set of key roles across systems. Our conclusion is that patient and carer leaders can raise the profile of improving experience of care and have a real impact on action being taken in response to patient and carer feedback.

Creative Commons License

Creative Commons License
This work is licensed under a Creative Commons Attribution-Noncommercial-No Derivative Works 4.0 License.

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