Integrating patient-reported data from multiple sources into registries and research databases for inflammatory bowel disease (IBD)

Great opportunities exist for remote, electronic, longitudinal capture of patient-reported outcomes (PROs) directly using questionnaires (ePROMs) as part of routine clinical care, thereby enhancing the potential to include PROs in clinical trials. However, the fragmented nature of NHS IT and electronic patient record (EPR) systems and uncoordinated rise of patient-facing data collection tools (apps, portals, web-based tools) with multiple systems for collecting patient-reported data driven by NHS organisations, EPR providers, 3^rd party vendors (e.g. condition-specific apps), registries and research databases, is problematic. There is a lack of standardisation and inter-operability.

Realising the benefits of ePROM data for research, and engaging patients as active participants in registries and research databases, requires diverse systems to be integrated into emerging repositories of data with appropriate consent and data security. Most research projects use a singular online patient survey system rather than leveraging locally-deployed tools integrated into clinical care and IT infrastructures. Unanswered questions relate to: i) the feasibility of doing this for data captured in diverse systems; ii) the reliability of data from different sources; iii) the performance of ePROMs across different systems; and iv) factors associated with successful longitudinal monitoring of PROs. (patient factors, IT system factors). There are opportunities to develop better ways to automate the integration of data into existing clinical datasets and to create algorithms to derive compositive outcome measures by linking patient-reported, clinician-reported and other data feeds. Methods are needed to verify data quality and resolve discrepancies between patient- and clinical-reported data.

Using the exemplar condition of IBD, the student will undertake surveys (and/or semi-structured interviews) of clinicians and EPR/App providers to map diversity and coverage of ePROM collection tools in use, their content (choice of PRO instruments and other patient-generated data), extent of EPR integration, information governance and status of sharing and linkage with national data repositories (IBD Registry, HDR UK Gut Reaction). This will enable the student to identify addition research gaps, depending on their interests and experience. These may include: technical and human factors associated with successful or unsuccessful local deployment of different ePROM systems; equivalence of ePROM performance across varied methods of capture; understanding barriers and facilitators to the central integration of multi-source ePROM data into national data repositories; algorithms to support integration of patient- and clinician-reported outcome data to derive end-points.

Supervision

Keith Bodger brings experience of PROM development in IBD, lead roles in national repositories (UK IBD Registry) with international research links with clinical registries collecting ePROMs. Paula Williamson has wide-ranging expertise in clinical trials (including core outcome sets), with experience in trials both using ePROM data and not. Gemma Cherry brings extensive experience of qualitative research methods.

Further Opportunities

This iCASE studentship offers industry placement with AIMES, a cloud-based data science infrastructure company spun-out of UoL. AIMES hosts data both for the HDR UK Digital Innovation Hub for IBD (Gut Reaction) and the UK Inflammatory Bowel Disease Registry, with the studentship benefiting from research access to patient survey data collected via the registry. The company provides services and solutions to support the collection, secure storage, curation, and analysis of data s expertise in cloud-based infrastructure, physical and systems security, data governance and data standards within the healthcare field, with experience of integrating data from heterogenous sources and systems and supporting distributed applications.

Together with the student, we will recruit two patient research partners to advise either through local IBD patient panel at Liverpool University Hospital Foundation Trust or via established links with Crohn’s & Colitis UK.         

HOW TO APPLY

You are applying for a PhD studentship from the MRC TMRP DTP. A list of potential projects and the application form is available online at:

http://www.methodologyhubs.mrc.ac.uk/about/tmrp-doctoral-training-partnership/

Please complete the form fully. Incomplete forms will not be considered. CVs will not be accepted for this scheme.

Please apply giving details for your first choice project. You can provide details of up to two other TMRP DTP projects you may be interested in at section B of the application form.

Before making an application, applicants should contact the project supervisor to find out more about the project and to discuss their interests in the research before 09 January 2023.

The deadline for applications is 4pm (GMT) 16 January 2023. Late applications will not be considered.

Completed application forms must be returned to: [Email Address Removed]

Informal enquiries may be made to Dr Keith Bodger - [Email Address Removed]