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ELIJAH: Electronic Linkage for Inflammatory bowel disease to deliver Joint Access to Health-reports / Phedra L. Dodds

Swansea University Author: Phedra L., Dodds

DOI (Published version): 10.23889/Suthesis.50579

Abstract

Aims The aim of my research was to evaluate a novel way to empower patients with inflammatory bowel disease by giving them access to personalised information about their condition and management. I also reviewed the literature relating to personal health records and have reflected on my experience o...

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Published: 2018
Institution: Swansea University
Degree level: Doctoral
Degree name: Ph.D
URI: https://cronfa.swan.ac.uk/Record/cronfa50579
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Abstract: Aims The aim of my research was to evaluate a novel way to empower patients with inflammatory bowel disease by giving them access to personalised information about their condition and management. I also reviewed the literature relating to personal health records and have reflected on my experience of conducting research from my perspective as a nurse practitioner. Methods We took a pragmatic mixed methods approach to the study. We convened a local focus group and employed a summative analysis technique to explore the topic. Based on the outcomes of the focus group we developed an intervention (ELIJAH) that extended the local IBD electronic health record to enable the creation of individualised IBD health reports that were educationally enriched. We tested this intervention in a pragmatic randomised controlled feasibility study with 61 patients from one District General Hospital in South Wales. From the learning and recommended modifications of the feasibility study we drew up a protocol for a fully powered phase III trial of the intervention. Results The focus group showed that patients wanted more access to their IBD health records and individualised education about their disease. The randomised controlled feasibility study of the ELIJAH intervention showed that the intervention met the clinical and feasibility criteria, and the intervention with modifications could be progressed for a fully powered phase III trial. Conclusion The ELIJAH intervention is wanted by patients and is feasible to produce and test.
Item Description: A selection of third party content is redacted or is partially redacted from this thesis.
Keywords: Inflammatory Bowel Disease, IBD, Ulcerative Colitis, Crohn’s Disease, patient access to records, electronic health records, EHR, personal health records, PHR
College: Swansea University Medical School