Designing an interoperable patient portal to augment an Advanced Nurse Practitioner service for Children with hydrocephalus

Background: Children's Health Ireland (CHI), who govern and operate acute paediatric services for the greater Dublin area, are also the client for the new children's hospital project which will be Ireland's first fully digital hospital. Design, development and implementation of digital solutions has been prioritised by the National Strategy for Children's Nursing to transform and accelerate nurse-led services. Aim: The aim of this phase of a larger study was to explore the perspectives and opinions of key stakeholders on the requirements, benefits, and challenges for a bespoke patient portal, with a specific focus on the ANP-led Neurosurgical Service and children and young people with hydrocephalus. Methods: Interviews and focus groups were held online, and data were recorded and transcribed verbatim. Twenty-three participants across eight sites were interviewed including parents, healthcare professionals, experts and management/administrators. Data were analysed using Braun and Clarke's (2006) framework. Results: Four key findings and considerations were identified in relation to patient portals in general and their interoperability with Electronic Health Records, as well as a bespoke patient portal for children and young people with hydrocephalus Conclusions: The availability of a patient portal for children and young people with hydrocephalus would be hugely advantageous to their parents, the ANP led nursing service, and healthcare professionals in both the neurosurgical service at CHI and at regional healthcare organisations as well as for administration, research, and reports. More timely access to health data as well as a consistent log of information and communications between patients and healthcare professionals, would be more efficient and effective than current practices.The augmented ANP-led Neurosurgical Nursing Service at CHI will act as a pilot project from which other nurse-led digital patient services can learn from. Study Registration: This study was conducted between September 2022 and June 2023.