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Analysis of Information Value Chains for Gout Self-Care Management" (2020)

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University of Kentucky UKnowledge Theses and Dissertations--Communication Communication 2020 ANALYSIS OF INFORMATION VALUE CHAINS FOR GOUT SELF- CARE MANAGEMENT Maranda Russell University of Kentucky, [email protected] Author ORCID Identifier: https://orcid.org/0000-0001-6405-4807 Digital Object Identifier: https://doi.org/10.13023/etd.2020.358 Right click to open a feedback form in a new tab to let us know how this document benefits ou.y Recommended Citation Russell, Maranda, "ANALYSIS OF INFORMATION VALUE CHAINS FOR GOUT SELF-CARE MANAGEMENT" (2020). Theses and Dissertations--Communication. 96. https://uknowledge.uky.edu/comm_etds/96 This Doctoral Dissertation is brought to you for free and open access by the Communication at UKnowledge. It has been accepted for inclusion in Theses and Dissertations--Communication by an authorized administrator of UKnowledge. For more information, please contact [email protected]. STUDENT AGREEMENT: I represent that my thesis or dissertation and abstract are my original work. Proper attribution has been given to all outside sources. I understand that I am solely responsible for obtaining any needed copyright permissions. I have obtained needed written permission statement(s) from the owner(s) of each third-party copyrighted matter to be included in my work, allowing electronic distribution (if such use is not permitted by the fair use doctrine) which will be submitted to UKnowledge as Additional File. I hereby grant to The University of Kentucky and its agents the irrevocable, non-exclusive, and royalty-free license to archive and make accessible my work in whole or in part in all forms of media, now or hereafter known. I agree that the document mentioned above may be made available immediately for worldwide access unless an embargo applies. I retain all other ownership rights to the copyright of my work. I also retain the right to use in future works (such as articles or books) all or part of my work. I understand that I am free to register the copyright to my work. REVIEW, APPROVAL AND ACCEPTANCE The document mentioned above has been reviewed and accepted by the student’s advisor, on behalf of the advisory committee, and by the Director of Graduate Studies (DGS), on behalf of the program; we verify that this is the final, approved version of the student’s thesis including all changes required by the advisory committee. The undersigned agree to abide by the statements above. Maranda Russell, Student Dr. Sujin Kim, Major Professor Dr. Anthony Limperos, Director of Graduate Studies ANALYSIS OF INFORMATION VALUE CHAINS FOR GOUT SELF-CARE MANAGEMENT ________________________________________ DISSERTATION ________________________________________ A dissertation submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy in the College of Communication and Information at the University of Kentucky By Maranda Russell Lexington, Kentucky Director: Dr. Sujin Kim, Associate Professor of Information Science and Biomedical Informatics Lexington, Kentucky 2020 Copyright © Maranda Russell 2020 https://orcid.org/0000-0001-6405-4807 ABSTRACT OF DISSERTATION ANALYSIS OF INFORMATION VALUE CHAINS FOR GOUT SELF-CARE MANAGEMENT This value chain analysis study sought to identify information needed by gout patients to successfully manage their disease, leading to a model for information extraction from patient health records. A scoping review was conducted to identify the types of information needed by gout patients. The findings of each included study were divided and analyzed according to the stages of the care delivery value chain. The results of the review were then used to create a gout information value chain as criteria for annotating the information deemed important for gout patients contained in publicly available patient education materials according to the stages of care delivery. The resulting annotations were used to develop a named entity recognition model capable of automatically labelling medical concepts from clinical notes by value chain stage. To identify concepts specifically relevant to gout patients, the concepts extracted from patient notes were used as candidate features in a phenotyping algorithm to identify concepts associated with gout flares. While this study was able to develop a model for identifying information relevant to gout flares, the findings suggest that there is information missing from patient education materials and their clinical notes that could be valuable to gout patients for self-management. KEYWORDS: care delivery value chain, patient information, cNLP, gout management Maranda Russell (Name of Student) 7/30/20 Date ANALYSIS OF INFORMATION VALUE CHAINS FOR GOUT SELF-CARE MANAGEMENT By Maranda Russell Sujin Kim Director of Dissertation Anthony Limperos Director of Graduate Studies 7/30/20 Date DEDICATION To Rocky and Nancy Russell, without whom I never would have stepped foot on a college campus. ACKNOWLEDGMENTS This dissertation, although an individual work, could not have been completed without the selfless support and constant encouragement of many people over the course of my academic career. I could have never completed this dissertation without each and every one of you that believed in me when I did not believe in myself. First, I want to specifically express my gratitude to Dr. Sujin Kim, who acted as my mentor and committee chair, for your commitment, support, and patient guidance throughout the entire process. I also greatly benefited from the constructive criticism and feedback provided by a flexible and helpful dissertation committee: Dr. Jeff Huber, Dr. Soohyung Joo, Dr. Ramakanth Kavuluru, and Dr. Debra Moser. Each of you challenged my thinking and provided valuable insights to improve this dissertation. In addition to all of the support and assistance I received from the faculty, staff, and fellow graduate students at the University of Kentucky, I am equally grateful to be the recipient of limitless support from family who continually encouraged and motivated me to continue my education. Thank you to my husband, Michael, for acting as a sounding board and providing critical technical assistance. All of the little things you do on a daily basis did not go unnoticed or unappreciated. Finally, my endless gratitude goes to all of my in-laws who provided childcare and other support throughout my many years of education. You all have helped me grow as a person and I am blessed to have you in my life. iii TABLE OF CONTENTS ACKNOWLEDGMENTS .................................................................................................................................... iii TABLE OF CONTENTS ...................................................................................................................................... iv LIST OF TABLES .............................................................................................................................................. vii LIST OF FIGURES ........................................................................................................................................... viii CHAPTER 1. INTRODUCTION ....................................................................................................................... 1 1.1 Background ....................................................................................................................................... 1 1.2 Statement of Problem ....................................................................................................................... 2 1.3 Study Purpose.................................................................................................................................... 4 1.4 Study Importance .............................................................................................................................. 5 1.5 Research Questions ........................................................................................................................... 6 1.6 Research Design Overview ................................................................................................................ 7 1.7 Summary ........................................................................................................................................... 7 CHAPTER 2. LITERATURE REVIEW ................................................................................................................ 9 2.1 Background ....................................................................................................................................... 9 2.1.1 Personal Health Records........................................................................................................ 11 2.1.2 Health Literacy ....................................................................................................................... 12 2.1.3 cNLP Methods ....................................................................................................................... 13 2.1.3.1 Pipelines/Algorithms .................................................................................................... 13 2.2 Theoretical Framework ................................................................................................................... 14 2.3 Overview ......................................................................................................................................... 15 2.3.1 Healthcare Applications........................................................................................................
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