Systematic review on the involvement and engagement of patients as advisers for the organisation of organ transplantation services

OBJECTIVES: This systematic review aims to derive practical lessons from publications on patient involvement and engagement in the organisation of organ transplantation services. DESIGN: This systematic review was conducted according to the Preferred Reporting Items for Systematic reviews and Meta-Analyses. Inclusion criteria for the analysis of publications in English cited in the databases PubMed and Web of Science until 6 December 2022 required that patients participated as advisers in the organisation of organ transplantation services. Quality assessment was performed using the Guidance for Reporting Involvement of Patients and the Public (GRIPP) 2 small form and the Critical Appraisal Skills Programme (CASP) tool for the assessment of the risks of bias. RESULTS: Deployed search strings identified 2263 records resulting in a total of 11 articles. The aims and strategies, deployed methods, observed effects, observed barriers and proposed improvements for the future varied vastly. All reported that well-developed programmes involving and engaging patients at an organisational level provide additional benefits for patients and foster patient-centred care. Lessons learnt include: (1) to empower patients, the information provided to them should be individualised to prioritise their needs; (2) financial as well as organisational resources are important to successfully implement patient involvement and engagement; (3) systematic feedback from patients in organisational structures to health providers is required to improve clinical workflows and (4) the consideration of ethical issues and the relationship between investigators and participating patients should be clarified and reported. CONCLUSIONS: Actionable management recommendations could be derived. The quantitative impact on clinical outcome and economic clinical process improvements remains to be investigated. Study quality can be improved using the GRIPP 2 guidance and the CASP tool. PROSPERO REGISTRATION NUMBER: CRD42022186467.