The PACT of Patient Engagement: Unraveling the Meaning Of

The PACT of Patient Engagement: Unraveling the Meaning of Engagement with Hybrid Concept Analysis Tracy Higgins Submitted in partial fulfillment of the requirements for the degree of Doctor of Philosophy under the Executive Committee of the Graduate School of Arts and Sciences COLUMBIA UNIVERSITY 2016 © 2016 Tracy Higgins All rights reserved ABSTRACT The PACT of Patient Engagement: Unraveling the Meaning of Engagement with Hybrid Concept Analysis Tracy Higgins Patient engagement has become a widely used term, but remains a poorly understood concept in healthcare. Citations for the term during the past two decades have increased markedly throughout the healthcare-related disciplines without a common definition. Patient engagement has been credited for contributing to improved outcomes and experiences of care. Means of identifying and evaluating practices that facilitate patient engagement in care have become an ethical imperative for patient-centered care. This process begins with a definition of the concept. Concept analysis is a means of establishing a common definition of a concept through identification of its attributes, antecedents and consequences within the context of its use. Concept analysis is a methodology that has been used in social science and nursing as a means to resolve conceptual barriers to theory development in an evolving field. The methodological theory was based in the analytic philosophical tradition and sustained during the 20th century by the strength of philosophical positivism in the health sciences. This concept analysis is guided procedurally by Rogers’ evolutionary approach that incorporates postmodern philosophical principles and well-defined techniques. This dissertation is informed by the expanded and updated perspective of the neo-modern era in nursing research, which advances the concept analysis methodology further. An analysis of the concept underlying the term patient engagement in the scientific literature revealed four defining attributes: personalization, access, commitment and therapeutic alliance. These defining attributes were derived through thematic analysis of over 100 individual attributes shared among six categories and three domains. The resultant definition revealed that patient engagement is both process and behavior shaped by the relationship between patient and provider and the environment where healthcare delivery takes place. Patient engagement is defined as the desire and capability to actively choose to participate in care in a way uniquely appropriate to the individual, in cooperation with a healthcare provider or institution, for the purposes of maximizing outcomes or improving experiences of care. In addition to the attributes of the concept identified in the literature, themes relevant to patient engagement were identified through inputs from six focus groups of persons living with HIV in New York City. The focus group participants were convened to inform the development of a mobile application designed to support their healthcare needs. Their experiences, insights and expectations were valuable in ascertaining those actions or behaviors that may serve to assist the patient in obtaining and adhering to care. The focus group transcripts were coded twice. The first round occurred prior to the concept analysis of the literature and used emergent coding methodology to capture meanings independent of the findings of the concept analysis. The second round occurred after the concept analysis of the literature and used the resultant attributes to perform a directed concept analysis of the transcripts. The content analyses of the transcripts from the patient perspective supported and reinforced the attributes from the concept analysis. The focus groups also highlighted another important aspect of patient engagement, that of privacy/confidentiality, which had not been specifically addressed in the concept analysis of the literature. The definition and the identified attributes serve as a heuristic in designing patient engagement strategies and as a basis for future development of the engagement concept in healthcare. The supporting concepts for engagement, especially the role of empathy in the therapeutic alliance, require further clarification and debate. While patient engagement may be promoted through face-to-face interactions or through health information technology, the defining attributes are invariable and should guide the design of engagement processes and tools. Finally, the value of understanding and exploring the defining attributes of patient engagement in medical and nursing education becomes clear, as is the need for continuing clinical training to support and encourage patient engagement skills. Table of Contents LIST OF TABLES iii LIST OF FIGURES iv GLOSSARY v ACKNOWLEDGEMENTS vii DEDICATION viii CHAPTER ONE: INTRODUCTION 1 Problem Statement 2 Research Aims and Methods 3 Significance 3 Philosophical Paradigm 4 CHAPTER TWO: LITERATURE REVIEW 9 Patient Engagement Frameworks 13 Patient Engagement and HIT 19 Meaningful Use 19 Chronic Disease Management 20 Mobile Technology 20 Concept Analysis in Nursing 21 Summary 27 CHAPTER THREE: METHODS 28 Aim 1. Defining the Concept from the Literature 28 Aim 2. Patient Engagement and Mobile Technology 38 CHAPTER FOUR: RESULTS 44 Aim 1. Review of the Patient Engagement Literature 44 Attributes 48 Antecedents 57 Consequences 61 Definition 62 Revisit of Attributes in the Literature 65 Exemplar 75 Related Terms 78 Patient Centered Care 78 Patient Activation 79 i Patient Empowerment 80 Patient Participation/Involvement 84 Conclusion 85 Aim 2. Emergent Content Analysis 87 Directed Content Analysis 100 Comparison of Emergent and Directed Concept Analyses 106 Conclusion 110 CHAPTER FIVE: DISCUSSION 113 Discussion of Findings 113 Comparison to Existing Definitions of Patient Engagement 121 Relationship to Other Conceptual PE Research 124 Implications for Policy 126 HIT 126 PCOR 132 Implications for Practice 136 Implications for Education 139 Implications for Further Research 141 Limitations 146 Conclusion 149 References 152 Appendix 171 ii List of Tables Table 1. Comparison of Patient Engagement Frameworks, p.18 Table 2. Approaches to Concept Analysis, p.26 Table 3. Composition of Focus Groups, p.39 Table 4. Summary of Methods, p. 43 Table 5. Individual Attributes by Domain, p.51 Table 6. Individual Attributes by Category, p. 53 Table 7. Antecedents, p. 60 Table 8. Consequences, p. 62 Table 9. Presence of Defining Attributes in the Literature Included in the Analysis, p.67 Table 10. Definitions and Descriptions of Defining Attributes from Concept Analysis, p.70 Table 11. Emergent Coding Categories and Themes, p. 88 Table 12. Emergent and Directed Themes, p. 108 Table 13. Crosswalk of Emergent Themes and Defining Attributes, p. 110 Table 14. Overview of Project, p. 112 iii List of Figures Figure 1. Chronological Sequence of Steps in Study, p.28 Figure 2. Literature Selected for Analysis, p.32 Figure 3. Process of Data Analysis for Attributes, p.37 iv Glossary Analytic Philosophy – early 20th century philosophy popular in the US and Great Britain; contrasts with continental philosophy in Europe (existentialism, phenomenology); based on principles of logical positivism and tries to improve upon natural language using modern logic to make it more unambiguous and capable of resolving philosophical problems. Antecedent – state or event that presents prior to manifestation of the concept. Approach – a theoretically sustained vantage point for analyzing a subject matter; more encompassing than a conceptual framework. Attribute – whatever may be predicated of an entity; characteristics or properties of a concept. Category – cluster of attributes or codes. Code – word or phrase that assigns a summative, salient or essence-capturing characteristic of a segment of language-based data. Concept – basic unit of thinking. We have a concept of A when we can distinguish A from whatever is not A. Conceptual Framework – a scheme of defined and differentiated concepts used for the study of a particular subject; more precise than an approach. Consequence – state or condition that occurs following manifestation of the concept. Construct – an idea or theory containing various conceptual elements, typically subjective and not based on empirical evidence. Dispositional View – concept characterized by possible or potential behaviors. Domain – a sphere of activity or knowledge. Entity View – concept characterized as a “thing” (e.g. fact, animal, object, abstract idea). Essentialism- certain attributes are necessary to form the identity or describe the function of an entity. Hermeneutic – method of interpretation. Heuristic – guide for problem-solving using hands-on or trial and error techniques. v Idealism – a philosophy that assumes that reality is mentally constructed and is skeptical that any mind-independent thing can be known; believes that our reality is shaped by our thoughts and ideas. Modernism – not a philosophical movement per se, but a reaction against tradition and the status quo following the industrial revolution. It sought to be progressive by rejecting conventional methods in the arts, and influenced philosophical thought during the late 19th and early 20th century. Here, in science, a reductionist view that relies on in empiricism and rationalism in scientific inquiry. Neomodernism – a philosophy that is based in modernism, yet addresses the critiques of modernism by post-modernism. Ordinary Language Philosophy – grew out of the earlier

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