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Co-designing and testing the learn together guidance to support patient and family involvement in patient safety investigations: a mixed-methods study

Title: Co-designing and testing the learn together guidance to support patient and family involvement in patient safety investigations: a mixed-methods study
Authors: O'Hara, Jane; Ramsey, Lauren; McHugh, Siobhan; Langley, Joseph; Waring, Justin; Simms-Ellis, Ruth; Louch, Gemma; Murray, Jenni; Macrae, Carl; Baker, John; Lawton, Rebecca; Halligan, Daisy; Rogerson, Olivia; Phillips, Penny; Hazeldine, Debra; Seddon, Sarah; Hughes, Joanne; Partridge, Rebecca; Ludwin, Katherine; Sheard, Laura
Publisher Information: NIHR Journals Library
Publication Year: 2025
Collection: University of Nottingham: Repository@Nottingham
Description: Background: There are multiple reasons for involving patients and families in incident investigations. Fiscally, costs due to clinical negligence claims approximate £4 billion annually. Logically, patients and families provide important information about patient safety incidents. Morally, involving harmed patients and families helps address their concerns. However, little United Kingdom-based evidence was available to support systematic involvement. Objective: To co-design processes and resources to guide the involvement of patients and families in incident investigations at a national and local level, and to test these processes to understand their impact upon experience, learning and likelihood of litigation. Design and methods: A mixed-methods programme of research was undertaken. Stage 1 comprised a scoping review of evidence for the experience of patients/families in incident investigations, and a documentary analysis of 43 National Health Service Trust incident investigation policies. Stage 2A extended this with 41 qualitative interviews with patients/ families, healthcare staff and investigators. Stage 2B synthesised previous data to develop common principles and programme theory. Stage 3 involved a 6-month co-design phase with a ‘co-design community’ of > 50 stakeholders. In stages 4 and 5, co-designed guidance was evaluated in a 15-month ethnography, within four National Health Service Trusts and the national independent investigatory body. Twenty-nine investigations were followed in real time, including 127 interviews and 45 hours of observation. Four final co-design workshops supported iterations to the final guidance and website. A substudy explored meaningful involvement in, and learning from, investigations following suicide via interviews and a qualitative survey involving 32 people (healthcare staff, policy-makers and managers; people bereaved by suicide). Findings: Stage 1 found stakeholders valued involvement, but it was not well supported by local policy, even though it likely reduces ...
Document Type: article in journal/newspaper
Language: English
Relation: https://nottingham-repository.worktribe.com/output/53687255; Health and Social Care Delivery Research; Volume 13; Issue 18
DOI: 10.3310/kjht3375
Availability: https://doi.org/10.3310/kjht3375; https://nottingham-repository.worktribe.com/file/53687255/1/Co-designing%20and%20testing%20the%20learn%20together%20guidance%20to%20support%20patient%20and%20family%20involvement%20in%20patient%20safety%20investigations; https://nottingham-repository.worktribe.com/output/53687255
Rights: openAccess ; https://creativecommons.org/licenses/by/4.0/
Accession Number: edsbas.BAE2271
Database: BASE