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Comparing Patient Engagement and Patient Advocacy Activities And Comparing Patient Engagement and Patient Advocacy Activities and Measuring Preferred Roles in Medical Decision Making among Cystic Fibrosis Patients, Caregivers, Family Members and Patient Advocates by Daniel Saliba A thesis submitted in conformity with the requirements for the degree of Doctor of Philosophy Institute of Health Policy, Management and Evaluation University of Toronto © Copyright by Daniel Saliba, 2019 Comparing Patient Engagement and Patient Advocacy Activities and Measuring Preferred Roles in Medical Decision Making among Cystic Fibrosis Patients, Caregivers, Family Members and Patient Advocates Daniel Saliba Doctor of Philosophy, 2019 Institute of Health Policy, Management and Evaluation University of Toronto Abstract Background: Patient engagement has become a priority for healthcare organizations, yet remains inconsistently defined. Patient engagement has also become a priority for healthcare providers. Current discourse suggests that patients today desire more control over medical decision making than ever before, and that the proliferation of online health information is empowering patients to make autonomous medical decisions. Yet, prior research indicates that patients typically prefer to share decisions with their physician, raising questions about what patient engagement is and whether preferences have changed over time. Methods: This study addresses multiple research questions using three phases of data collection. Phase one asked: how are ‘patient engagement’ and ‘patient advocacy’ defined and perceived by individuals who are involved in engagement and advocacy activities? This question was addressed by conducting semi-structured key informant interviews (N=11). Phases two and three examined preferred roles in medical decision making among cystic fibrosis (CF) patients, caregivers, family members and patient advocates, and whether these roles were related to: trust in the physician, self-assessed health information literacy and demographics. ii Phase two involved conducting a quantitative cross-sectional survey (N=165), which included three scales: the Problem-Solving Decision-Making Scale (PSDM), the Trust in Physician Scale (TPS), and the electronic Health Information Literacy Scale (eHEALS). T-tests and logistic regressions were computed to determine the relationships between variables. Phase three involved interviewing a subgroup of survey participants to help to explain survey results (N=19). Thematic analysis was used to identify common themes. Results: Our findings suggest that patient engagement and advocacy have multiple meanings, that most survey participants preferred to share medical decisions with their physician (>80%), and that self-assessed health information literacy was associated with preferred roles; as eHealth literacy went down, so did desire for participation in making medical decisions. Follow-up interviews supported these results; participants mentioned how they assessed the credibility of online health information and how they preferred to direct questions to their physician. Conclusion: This research highlights the need for clear language regarding patient engagement activities. This study also suggests that eHealth literacy may influence decision making preferences, and that preference for autonomous decision making should not be assumed. iii Acknowledgements The completion of this thesis would not have been possible without the unwavering guidance and contributions of so many people. Firstly, I would like to express my gratitude to my supervisor, Dr. Raisa Deber. In addition to her witty personality and brilliant insights, it was Raisa’s ongoing encouragement and support that made this journey conquerable. It was truly an honour to have learned from such a genuine person and first-rate scholar. I must also thank my committee members, Dr. Don Willison and Dr. Nancy Kraetschmer, for their valuable contributions to this research. Their constructive feedback always challenged me to consider new ideas and concepts that I would have otherwise overlooked. It was in these challenging moments that I grew most as a health services researcher. I would also like to thank Cystic Fibrosis Canada (CFC), the former CEO and President of CFC, Norma Beauchamp, and every participant for making this work possible. I owe one individual in particular, Kim Steele, my utmost appreciation. From the outset, Kim played an instrumental role in helping me access members from the CF community and was always very supportive. Finally, I would like to acknowledge my family members and friends for bearing with me during this endeavour. Their love and support throughout this journey has been valuable beyond words. iv Table of Contents Abstract ...................................................................................................................................... ii Acknowledgements .................................................................................................................... iv Table of Contents ........................................................................................................................ v List of Figures and Tables.......................................................................................................... ix List of Appendices ...................................................................................................................... x List of Abbreviations .................................................................................................................. x Chapter 1: Background and Objectives..................................................................................... 1 1.1 Research Questions ......................................................................................................... 4 1.2 Data Collection Phases .................................................................................................... 5 1.3 Thesis Outline ................................................................................................................. 6 Chapter 2: Concepts and Literature Review ............................................................................. 8 2.1 Patient Engagement ......................................................................................................... 8 2.1.1 Types of Patient Engagement Activities ........................................................... 10 2.2 Patient Advocacy .......................................................................................................... 16 2.2.1 Types of Patient Advocacy Activities ............................................................... 17 2.3 The Physician Patient Relationship ............................................................................... 20 2.3.1 Paradigms of Medical Practice .......................................................................... 20 2.4 Preferred Roles in Medical Decision Making ............................................................... 25 2.4.1 Caregivers and Family Members ...................................................................... 32 2.5 The Role of the Internet ................................................................................................ 33 2.6 Health Literacy and eHealth Literacy ........................................................................... 36 2.7 Trust in Physicians ........................................................................................................ 39 v Chapter 3: Methods ................................................................................................................. 42 3.1 Research Design Overview ........................................................................................... 42 3.2 Ethical Considerations .................................................................................................. 43 3.3 Phase 1: Key Informant Interviews ............................................................................... 43 3.3.1 Objectives and Research Questions .................................................................. 43 3.3.2 Study Population and Data Collection .............................................................. 44 3.3.3 Data Analysis .................................................................................................... 46 3.3.4 Interview Guide for Key Informant Interviews ................................................. 47 3.4 Phase 2: Cross-sectional Survey ................................................................................... 48 3.4.1 Objectives and Research Questions .................................................................. 48 3.4.2 Study Population ............................................................................................... 50 3.4.3 Data Collection .................................................................................................. 52 3.4.4 Survey Content .................................................................................................. 53 3.4.5 Data Coding and Missing Values ...................................................................... 59 3.4.6 Data Analysis .................................................................................................... 61 3.5 Phase 3: Follow-up Interviews of Survey Participants.................................................... 62 3.5.1 Objectives and Research Questions .................................................................. 62 3.5.2 Study Population and Data Collection
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