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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
first_indexed 2019-06-05T11:07:52Z
last_indexed 2019-10-21T16:56:20Z
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recordtype RisThesis
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spelling 2019-06-06T16:46:50.2713036 v2 50579 2019-05-30 ELIJAH: Electronic Linkage for Inflammatory bowel disease to deliver Joint Access to Health-reports 85332107014e11967ec65d46878f2f57 NULL Phedra L. Dodds Phedra L. Dodds true true 2019-05-30 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. E-Thesis Inflammatory Bowel Disease, IBD, Ulcerative Colitis, Crohn’s Disease, patient access to records, electronic health records, EHR, personal health records, PHR 31 12 2018 2018-12-31 10.23889/Suthesis.50579 A selection of third party content is redacted or is partially redacted from this thesis. COLLEGE NANME Swansea University Medical School COLLEGE CODE Swansea University Doctoral Ph.D 2019-06-06T16:46:50.2713036 2019-05-30T16:36:52.7165153 Faculty of Medicine, Health and Life Sciences Swansea University Medical School - Medicine Phedra L. Dodds NULL 1 0050579-30052019165354.pdf Dodds_Phedra_L_PhD_Thesis_Final_Redacted.pdf 2019-05-30T16:53:54.8270000 Output 3555851 application/pdf Redacted version - open access true 2019-05-30T00:00:00.0000000 true
title ELIJAH: Electronic Linkage for Inflammatory bowel disease to deliver Joint Access to Health-reports
spellingShingle ELIJAH: Electronic Linkage for Inflammatory bowel disease to deliver Joint Access to Health-reports
Phedra L. Dodds
title_short ELIJAH: Electronic Linkage for Inflammatory bowel disease to deliver Joint Access to Health-reports
title_full ELIJAH: Electronic Linkage for Inflammatory bowel disease to deliver Joint Access to Health-reports
title_fullStr ELIJAH: Electronic Linkage for Inflammatory bowel disease to deliver Joint Access to Health-reports
title_full_unstemmed ELIJAH: Electronic Linkage for Inflammatory bowel disease to deliver Joint Access to Health-reports
title_sort ELIJAH: Electronic Linkage for Inflammatory bowel disease to deliver Joint Access to Health-reports
author_id_str_mv 85332107014e11967ec65d46878f2f57
author_id_fullname_str_mv 85332107014e11967ec65d46878f2f57_***_Phedra L. Dodds
author Phedra L. Dodds
author2 Phedra L. Dodds
format E-Thesis
publishDate 2018
institution Swansea University
doi_str_mv 10.23889/Suthesis.50579
college_str Faculty of Medicine, Health and Life Sciences
hierarchytype
hierarchy_top_id facultyofmedicinehealthandlifesciences
hierarchy_top_title Faculty of Medicine, Health and Life Sciences
hierarchy_parent_id facultyofmedicinehealthandlifesciences
hierarchy_parent_title Faculty of Medicine, Health and Life Sciences
department_str Swansea University Medical School - Medicine{{{_:::_}}}Faculty of Medicine, Health and Life Sciences{{{_:::_}}}Swansea University Medical School - Medicine
document_store_str 1
active_str 0
description 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.
published_date 2018-12-31T07:45:11Z
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score 11.544631

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