Capturing, aligning and harnessing the potential of electronic patient reported outcomes

Capturing, aligning and harnessing the potential of electronic patient reported outcomes alongside routine clinical care at Great Ormond Street Hospital

Background:
An electronic infrastructure including the EPIC electronic health record system and the Digital Research Environment (DRE) at Great Ormond Street Hospital (GOSH) creates opportunities to investigate the added value of incorporating routinely captured patient reported outcomes (PROs) into routine care. This has the potential to improve quality of clinical care and also facilitate the adoption of clinical trials using routinely captured data. The latter has an increasing focus on PROs yet at present these are not routinely collected.

This proposal would develop an app (either stand-alone, or progressive web app) to capture PROs which could be integrated appropriately with routine clinical data for clinical encounters at GOSH, within the DRE. The student would perform a literature review of validated PROs to capture quality of life relevant to children and young people and their carers. A pan-GOSH survey to clinical teams would investigate current PROs that are preferred by subspecialty teams or commonly involved in clinical trials to ensure that the results from the literature review are comprehensive and up to date. An app would be developed to capture PROs (single / multiple) which would then be linked to patient level data within the DRE. This would be founded on principles of interoperability in order that the outputs from the PhD had an impact both within GOSH and beyond to other EHR systems.

Aims/Objectives:
This project will explore the addition of electronic patient reported outcomes alongside routinely collected data in an electronic health record, for the benefit of patients and their clinical care teams at GOSH.

Methods:
1. Literature review and GOSH survey to inform selection of generic and condition-specific quality of life measures for linkage with EHR.
2. With involvement from children and young people (CYP) to guide patient-facing components, build app to measure quality of life (QoL) according to most appropriate measure(s) in (1) that can integrate with patient-level EHR data in DRE, with potential to select generic QoL measures and/or disease-specific QoL measures. This would be done using appropriate standards for definition and recording. Explore non-app approaches (including email links to PRO/survey to save need for additional app from user perspective if multiple PROs cannot be incorporated into same app, or embedding directly within the EHR at GOSH), and also patient preference for method.
3. With involvement from CYP, design and develop a patient-facing dashboard to see change over time in PRO in addition to their clinical outcomes already available via the existing MyGOSH app. Explore patient and carer perspectives using a mixed methods approach.
4. Conduct pilot study to explore feasibility of consent for PRO data collection in routine care at GOSH – explore e.g. frequency of data collection vs data completeness, age for completion by parent (proxy) or by child/young person, perceived utility by clinical teams and families.
5. Collect data prospectively using app within GOSH to demonstrate feasibility of proof of principle (e.g. pilot within 1-2 subspecialty groups).