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© 2013 CHARLESA HANN ALL RIGHTS RESERVED CITIZEN PARTICIPATION IN HEALTH POLICY AGENDA-SETTING: PERCEPTIONS OF THOSE INFLUENCING POLICY A Dissertation Presented to The Graduate Faculty of The University of Akron In Partial Fulfillment of the Requirements for the Degree Doctor of Philosophy Charlesa A. Hann December, 2013 CITIZEN PARTICIPATION IN HEALTH POLICY AGENDA-SETTING: PERCEPTIONS OF THOSE INFLUENCING POLICY Charlesa A. Hann Dissertation Approved: Accepted: Advisor Department Chair Dr. Raymond Cox Dr. John Green Committee Member Dean of the College Dr. Ghazi Falah Dr. Chand Midha Committee Member Dean of the Graduate School Dr. Namkyung Oh Dr. George Neukome Committee Member Date Dr. Lawrence Keller Committee Member Dr. Kathryn Feltey ii ABSTRACT This study explored the experiences and perceptions of citizen participation in health policy agenda-setting held by those citizens most likely to influence the health policy process: legislators and health policy advocates. Findings from a review of the literature regarding previous studies of the process of citizen participation were used to guide a qualitative research project in North Carolina. A case study approach was employed to facilitate an in-depth exploration of the meanings and perceptions of legislative members of the North Carolina General Assembly and Executive Directors of health policy advocacy organizations in North Carolina. Using a non-probability sampling procedure, study participants of the legislative case type were purposefully selected based upon membership in legislative committees and sponsorship of particular legislation, and recruited on a volunteer basis. Study participants of the other case type – Directors of health policy organizations and health programs – were recruited by referral. This interconnected system possesses behaviors and attitudes that impact the process of citizen participation in health policy decisions. Cases were interviewed, using a semi-structured format to identify common themes regarding citizen participation in healthcare policy decision-making and agenda- setting. A total of thirteen (six legislators and seven health activists) interviews were completed: five were in-person and eight were telephone interviews. Categories of text from the interviews were analyzed for content and themes, using a holistic analysis iii approach. A detailed description of each case and themes within the case (within-case analysis) and thematic analysis (cross-case analysis) permitted interpretive assertions of the lessons learned. This study revealed that the attitudes and perceptions of political actors (both case types) in North Carolina impact the methods in which citizens participate and the input of their participation in health policy decisions. iv DEDICATION IN MEMORY OF Ms. Carolyn E. Hann My rock, my strength, my supporter and motivator IN HONOR OF My children, for their understanding and sacrifices throughout this journey v ACKNOWLEDGEMENTS The completion of this dissertation was made possible through the continuous support of many. Special thanks go to the following people, whose willingness to help is much more appreciated than words can describe: Dr. Raymond Cox III, who helped to shape the dissertation topic and, as my advisor, guided and supported my research, always challenging me to expand my personal interpretations and understanding. I am eternally grateful. Dr. Gahzi Falah, and Dr. Namkyung Oh, whom were willing to join my committee, and offer valuable methodological feedback on this project. Thank you for your direction and support. Dr. Lawrence Keller, Associate Professor Emeritus at Cleveland State University, whose dedication to this project exceeded his professional obligations. Thank you for hanging in there with me. Dr. Kathryn Feltey, Associate Professor in the Department of Sociology, whose research experience in this topic was highly valued. Thank you for your structured guidance and words of encouragement and support. Ms. Theresa Naska, Administrative Assistant in the Department of Public Administration and Urban Studies, who made it possible to complete this project from a distance through countless phone calls, emails, and faxes. Thank you for handling the paperwork and operations in my physical absence! vi A special thank you to all of the family and friends whose confidence is my ability to succeed, despite considerable life hurdles, pushed me over the top and across the finish line. Love to you all! Finally, thank you to all of the faculty, staff, and students at Wingate University, where I have been employed as an adjunct professor throughout the completion this project. The support and encouragement provided by so many has been invaluable. vii TABLE OF CONTENTS Page LIST OF TABLES . xii LIST OF FIGURES . xiii CHAPTER I. INTRODUCTION . 1 Statement of the Problem . 4 The Research Issue . 5 The Research Approach . 7 Conclusion . 7 II. REVIEW OF THE LITERATURE . 9 Citizen Engagement and Participation in Agenda-setting . 9 Health Policy Agenda-setting . 17 Citizen Participation in Health Policy Agenda-setting . 19 Citizen Participation in Health Policy Agenda-setting Across Three Nations . 24 The United States . 25 The United Kingdom . 31 Canada . 39 Conclusion . 47 Research Questions . 48 viii Conceptual Definitions . 48 III. METHODS . 50 Design of the Study . 50 Design Rationale . 51 Participant Selection and Recruitment . 52 Data Collection . 56 Data Recording . 58 Data Coding . 58 Data Analysis . 60 Sampling . 60 Identifying Themes . 61 Marking Texts . 61 Building Codebooks . 62 IV. RESULTS OF THE STUDY. 63 Restatement of the Problem . 63 The Study . 64 Description of the Cases and Their Contexts . 64 Data Analysis and Findings . 70 The Themes . 73 Citizen Lack of Interest, Knowledge, and Experience (LIKE) . 74 Complexity of Health Policy (COMP) . 76 Methods of Citizen Participation . 78 Voting by Citizens (VOTC) . 79 ix Social and Advocacy Groups for Citizens (GRPS) . 81 Communication and Relationships (CORE) . 83 Education and Engagement Efforts (EDEN) . 85 Influences in Health Policy Decision-making (INFL) . 88 Voting by Legislators (VOTL) . 93 Conclusion . 95 V. SUMMARY, CONCLUSIONS, AND IMPLICATIONS . 98 Restatement of the Problem . 98 Restatement of the Research Issue . 99 Summary . 99 Review of the Central Themes and Findings . 101 Limitations and Continuing Problems . 103 Conclusion . 104 Implications . 105 Implications for Future Research . 108 REFERENCES . 113 APPENDICES . 118 APPENDIX A INSTITUTIONAL REVIEW BOARD APPROVAL . 119 APPENDIX B PARTICIPANT LETTER . 120 APPENDIX C INTERVIEW QUESTIONS . 122 APPENDIX D INTERVIEW RESPONSES . 124 x LIST OF TABLES Table Page 3.1 Distribution of NCGA Committee Membership in the Sample Frame . 53 3.2 Distribution of NCGA Bill Sponsorship in the Sample Frame . 55 4.1 Membership and Years of Policy Experience of Study Participants . 66 4.2 Codebook . 71 4.3 Coding Form . 73 4.4 Frequency of Responses Related to the Theme: Lack of Information, Knowledge, and Experience (LIKE) . 74 4.5 Frequency of Responses Related to the Theme: Complexity of Health Policy (COMP) . 77 4.6 Frequency of Responses Related to the Theme: Voting by Citizens (VOTC) . 79 4.7 Frequency of Responses Related to the Theme: Social and Advocacy Groups for Citizens (GRPS) . 82 4.8 Frequency of Responses Related to the Theme: Communication and Relationships (CORE) . 83 4.9 Frequency of Responses Related to the Theme: Education and Engagement Efforts (EDEN) . ..