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Abstract

In 2019, we, as a group of patients and researchers, were invited to rethink how the executive board received and responded to patient stories at a specific NHS hospital trust in the UK. Through an iterative series of meetings, we were able to co-identify common concerns and together develop a distinctive narrative framework for effecting change by sharing patient experiences. This narrative framework is designed to help patients position themselves as ‘part of their healthcare team,’ emphasising roles and responsibilities between patients and health practitioners to compare ideals with reality in patient experiences. While the project was promising, several factors led the hospital to withdraw from working with the group—including the COVID-19 pandemic and changes in key NHS staff. In this article, we report on key support structures and obstacles which influenced the project, as well as its outcomes and limitations, with a view to constructively informing future endeavours at other healthcare institutions. We offer concluding reflections on the significance of collective voice, accessibility, administrative support, and senior staff buy-in. We feel these reflections are especially important since the cumulative effects of austerity and the COVID-19 pandemic have made meaningful commitment to patient involvement significantly more challenging for healthcare institutions, both in the UK and beyond.

Experience Framework

This article is associated with the Infrastructure & Governance lens of The Beryl Institute Experience Framework (https://www.theberylinstitute.org/ExperienceFramework).

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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