Wider stakeholders' perspectives on successfully implementing electronic patient-reported outcome systems across organisations: a qualitative study in kidney care.

Abstract

Background: Large-scale ePRO systems inherently need to cross organisational boundaries to meet their full potential for improving care and outcomes. Doing this successfully requires involving all stakeholders. However, previous research in kidney disease and other conditions mainly focused on individual patients and healthcare professionals, leaving wider stakeholders' perspectives on how to implement cross-organisational ePRO systems unknown.

Methodology: We conducted 18 semi-structured interviews with key informants from national stakeholder organisations involved in delivering, commissioning, evaluating, or improving hospital-based kidney services in the United Kingdom. Interviews explored participants' views on kidney ePRO systems, including their perceived value, implementation challenges, and factors influencing uptake in routine kidney care. We applied the i-PARIHS implementation science framework to thematically analyse the data.

Results: Participants reported limited awareness of kidney ePROs and their potential benefits within their communities. Acknowledging constrained resources and competing priorities within the healthcare system, stakeholders suggested harnessing existing regional service improvement networks to support ePRO system implementation into kidney care pathways. They emphasised the need for coordinated efforts among national stakeholder organisations to drive and support local implementation. They also identified high quality evidence of ePROs' clinical utility and positive impact on kidney care and outcomes as a requirement for successful large-scale implementation, highlighting different types of impact as primarily relevant. Anecdotal evidence of ePRO benefits and real-world evidence of feasibility from local pilots were mentioned as complementary sources of knowledge to strengthen the case for cross-organisational ePRO system implementation in kidney care settings.

Conclusions: Successfully implementing cross-organisational ePRO systems in kidney services requires stakeholders to be better informed about ePROs' potential value, supported by robust and real-world evidence derived from studies in kidney disease. In a healthcare system under pressure, leveraging existing regional service improvement initiatives and coordinated leadership from a national cross-stakeholder group were considered key drivers of implementation success. Future research should strengthen the evidence base for kidney ePRO systems' effectiveness and implementation, while also exploring available health IT infrastructure. This will shape implementation strategies that enable healthcare systems to fully realise the potential of ePROs to improve kidney services and outcomes.