BACKGROUND:
The Going Digital Study uniquely captured the experiences of all user groups before and after digital transformation of Great Ormond Street Hospital for Children (GOSH) whilst implementing an electronic patient record (EPR) system with a tethered patient portal in April 2019. This was critical and core to GOSH becoming a digital hospital, with benefits anticipated, yet challenges for all.

AIM:
To investigate the practical, ethical and legal considerations of implementing an EPR in a children’s tertiary hospital involving three stakeholder groups: children and young people (CYP), parents and staff.

METHODS:
A three phase, concurrent mixed methods, pre/post study design was utilised including both quantitative (survey) and qualitative (World Café workshops/interviews/focus group) data collection, analysis and synthesis. A systematic review of the literature was also conducted and was key to informing the examination of the experiences of users of an electronic patient record system in a children’s hospital setting and interpretation of the findings.

RESULTS:
Despite the challenges experienced by all stakeholders, including ethical and legal issues associated with CYP and parents accessing health data for the first time through the patient portal, meaningful portal access can be achieved from the age of 12 years of age. Families need support accessing health information via the portal. Clinicians need to have early conversations with parents about truth-telling and sharing diagnoses and/or prognoses, supporting families through the process of disclosure. Staff need prolonged support to balance clinical demands during implementation of and adjustment to the new clinical system, whilst continuing care provision and managing families’ expectations.

CONCLUSION:
Implementation and transition to an EPR system with a tethered patient portal is complex and takes time to embed. Setting realistic expectations and involving all stakeholders at all stages is paramount if benefits for all are to be fully realised. Managing this change process well, with prolonged engagement over time with all stakeholders, is essential if future utility is to be achieved. This requires an inclusive culture, in which the voice of all children and young people and parents is valued, and enabled through investment of appropriate resources, with equity of access a key priority.