Going Digital Study - Phases 2 - 4
Research type
Research Study
Full title
Going Digital - The implementation of EPIC electronic patient records (EPR) in a paediatric tertiary hospital: Understanding the benefits and challenges for patients, parents and staff and the practical, ethical and legal implications - Phases 2-4
IRAS ID
248793
Contact name
Philippa Sipanoun
Contact email
Sponsor organisation
UCL GOS Institute of Child Health
Clinicaltrials.gov Identifier
ID: 13707/001, UCL Research Ethics Committee ID for Phase 1 (staff workshops); REC Ref: 18/NW/0624, HRA IRAS 252222 for Phase 1; 18WA27, UCL GOS ICH R&D for Phase 1 (parent/CYP workshops)
Duration of Study in the UK
2 years, 3 months, 30 days
Research summary
Research Summary
Great Ormond Street Hospital (GOSH) operates in a global healthcare environment, with growing pressure to provide quality care whilst reducing costs. The use of an electronic patient records (EPR) system which includes a patient portal (called MyGOSH) is critical and core towards GOSH becoming a digital hospital. Evidence suggests that EPRs have the potential to address many current challenges healthcare systems face. Benefits of its implementation are anticipated for all stakeholders. These include better quality of care as patients have their essential health data accessible to their different health providers, the provision of relevant, timely, up-to-date information that contributes to knowledge exchange for collaborative decision making across specialities and among multidisciplinary teams of health care professionals, thus, improved communication with patients and families. The aim of this research is to:
1) To understand from the perspective of patients, parents and staff;
- Their expectations regarding EPR and MyGOSH patient portal and whether these are met
- The benefits and challenges of transitioning to an EPR system and the use of MyGOSH
- Their information and support needs when accessing EPR and MyGOSH
- The impact of EPR and MyGOSH on interactions during in-patient and out-patient consultations2) To identify the ethical dilemmas and legal implications associated with the implementation of EPR and MyGOSH.
This is a single site, pre-post study with data being collected from a sample of all relevant stakeholders before and after the implementation of EPR and MyGOSH. A mixed methods design will be utilised with qualitative (interviews/participant observation in the form of 'A day in the life of' studies) and quantitative (survey) data being collected simultaneously and analysed discretely before a final stage of synthesis and interpretation. We will use the data collected to shape the delivery of the digital system at GOSH for the benefit of all stakeholders involved.
Summary of Results
- Findings are complex & heterogenous.
- Parents perceived staff to be unprepared for hospital’s transition to EPR/MyGOSH; parents also reported feeling unprepared.
- Unpreparedness → lack of standardisation (varied approaches to care reported by parents) → unfulfilled expectations.
- Complex tensions exist in relation to the parental role & responsibilities & their child’s developing autonomy, & reluctance to relinquish control over their child’s healthcare as the young person develops independence.
- Benefits from EPR/patient portal implementation were experienced but potential benefits more readily described.
- Due to prolonged period (12-18 months) for all users (particularly staff) to adjust to using new system.
- Complexities exist in the assessment for portal access, supporting/managing user expectations whilst providing an equitable service.
- Barriers exist to some young people/families accessing/using patient portals: Non-English speakers; physical, intellectual, or sensory difficulties or disabilities; cultural/religious/personal preferences.Recommendations for clinical practice when implementing an EPR system with a patient portal:
- Policy/Trust expectation to set end-user expectations early:
Consistent information from hospital: patient portal functionality for new/existing families, availability of technical/emotional support to realise the potential benefits of portal access.
- Staff support whilst transitioning/adapting to digital health initiatives, especially in the first 12-18 months following implementation.
- Deliver a consistent approach via portal across specialities/the hospital to lessen family anxiety/frustration: Communication; release of information e.g. results, YET provide individualised approach to care.
- Plan approaches to overcome barriers to accessing/using MyGOSH, ↓digital divide but provision of an equitable service for those who cannot/do not want to access the portal (religious/cultural/personal reasons).
- Utilise a best practice model to official interpreter use must be used to minimise young people translating medical information for their non-English speaking parents.
- Policy/Trust directive that young people will be supported in accessing their health records from the age of 12, which means early discussions/partnerships between young people, their parents and their care team(s) to: prepare young people to gradually increase their independence & autonomy; empower YP to gradually take increasing responsibility for their health, where able, & to prepare them for becoming the consenter; and to simultaneously support parents for when their child becomes the consenter.Action required:
- Directing discussions/communication towards young people, including clinic letters in a language the individual will understand.
- Deliver a coordinated approach to introduction of young people to a patient portal and commencing their journey transitioning from children’s/adolescent’s services into adult services e.g. linking the introduction of MyGOSH to the ‘Growing up and gaining independence’ framework.Recommendations for Future Research
- There is overwhelming evidence that it takes 12-18 months for end-users to even begin to feel confident & competent at navigating/using a ‘newly’ implemented EPR system. Follow-up data collection was at 12–18-months. An additional point of data collection would be beneficial to compare the study findings with the current perspectives of all relevant stakeholders.
- Continuous consultation with young people is required to determine ongoing portal utility that meets their diverse and varying needs: informal consultations through forums such as the YPF/YPAG; longitudinal research to gather YP experiences of evolving health-related platforms; co-design to ensure the portal is not a missed opportunity.
- National research to identify needs of families who experience barriers to accessing digital health.Conclusions
- The overwhelming message is that all those who will be affected by system implementation require targeted, individualised preparation pre-implementation, and support for a prolonged period post-implementation to promote satisfaction.
- Staff need prolonged support to balance clinical demands during implementation of/adjustment to the new clinical system, whilst continuing care provision & managing families’ expectations.
- A more young person-focused approach is required. Study demonstrates the need to listen to young people. They should be included at every step with due weight given to their views. Anything related to child health should not be created without young people being involved. The systematic review conducted as part of the study demonstrated clearly that worldwide this is not done.
- Complexities exist in implementing EPR/patient portal in a children’s hospital, whilst allowing young people access to their records but the Going Digital study provides evidence that this can be done.REC name
London - South East Research Ethics Committee
REC reference
18/LO/1945
Date of REC Opinion
24 Jan 2019
REC opinion
Further Information Favourable Opinion