Understanding the experiences of patient advocacy organizations in the policy process in Hong Kong

Abstract

The purpose of this study is to understand the impact of external events on the development of patient advocacy organizations in Hong Kong. I use the advocacy coalition framework (ACF) to explore: (1) the relationship between external events and policy change; (2) the roles and responses of patient advocates towards external events; (3) the changes in resources and strategies of patient advocates following external events; (4) the causal mechanism between external events and policy change. The ACF suggests that external events is one of the factors to explain policy change in the policy making process. However, the framework has not clearly specified the causal mechanism between external events and policy change. It mainly suggests the critical role of minority policy actors in mobilizing resources to advance their belief following external events which may lead to policy change. By analyzing policy responses of patient advocacy organizations to a series of external events between the 1990s and the present, this study attempts to explore how external events may influence the occurrence of policy change, contributing to this theoretical gap in the ACF. The target of this study includes three patient advocacy organizations, namely Community Rehabilitation Network (CRN), Hong Kong Alliance for Patients’ Organizations (HKAPO), Braincare. Qualitative research method was used. Around twenty in-depth interviews were conducted with leaders and staff of the patient advocacy organizations and professionals who had worked with them. Findings reveal that the origins and development of these patient advocacy organizations were closely tied to the occurrence of external events. The external events mainly related to the governmental policy initiatives in the healthcare and welfare spectrum and the SARS outbreak. In these three organizations, the mobilization of skillful leadership is critical for their formation and policy advocacy, particularly with the role of social work professionals. In their formation stage, these patient advocacy organizations did make use of external events to advance their belief on policy change. When time elapsed, contrary to the ACF assumptions, empirical evidence is found to demonstrate how external events had gradually transformed their original belief on patient advocacy and thus their roles in the policy making process. It was found that CRN has changed from a patient advocacy in the 1990s to a service provider in the primary care sector from 2000s onwards; HKAPO shifted its role as a patient advocate to a health policy decision-making stakeholder; Braincare enlarged its mission on patient education into policy advocacy for patients of brain injury. The allocation of resources, specifically, the behavior orientations on seeking resources were critical factors that explained these changes. It is argued that the resource-seeking behavior is the intervening variable between external events and policy change. Through the experiences of these three organizations, the importance of external events do not lay on its role in redistributing their resources, instead, it gradually shaped their beliefs on policy advocacy which affects the path of policy change.