Political priority and pathways to scale-up of childhood cancer care in five nations

Background Despite increasing global attention to non-communicable diseases (NCDs) and their incorporation into universal health coverage (UHC), the factors that determine whether and how NCDs are prioritized in national health agendas and integrated into health systems remain poorly understood. Childhood cancer is a leading non-communicable cause of death in children aged 0–14 years worldwide. We investigated the political, social, and economic factors that influence health system priority-setting on childhood cancer care in a range of low- and middle-income countries (LMIC). Methods and findings Based on in-depth qualitative case studies, we analyzed the determinants of priority-setting for childhood cancer care in El Salvador, Guatemala, Ghana, India, and the Philippines using a conceptual framework that considers four principal influences on political prioritization: political contexts, actor power, ideas, and issue characteristics. Data for the analysis derived from in-depth interviews (n = 68) with key informants involved in or impacted by childhood cancer policies and programs in participating countries, supplemented by published academic literature and available policy documents. Political priority for childhood cancer varies widely across the countries studied and is most influenced by political context and actor power dynamics. Ghana has placed relatively little national priority on childhood cancer, largely due to competing priorities and a lack of cohesion among stakeholders. In both El Salvador and Guatemala, actor power has played a central role in generating national priority for childhood cancer, where well-organized and -resourced civil society organizations have disrupted legacies of fragmented governance and financing to create priority for childhood cancer care. In India, the role of a uniquely empowered private actor was instrumental in creating political priority and establishing sustained channels of financing for childhood cancer care. In the Philippines, the childhood cancer community has capitalized on a window of opportunity to expand access and reduce disparities in childhood cancer care through the political prioritization of UHC and NCDs in current health system reforms. Conclusions The importance of key health system actors in determining the relative political priority for childhood cancer in the countries studied points to actor power as a critical enabler of prioritization in other LMIC. Responsiveness to political contexts–in particular, rhetorical and policy priority placed on NCDs and UHC–will be crucial to efforts to place childhood cancer firmly on national health agendas. National governments must be convinced of the potential for foundational health system strengthening through attention to childhood cancer care, and the presence and capability of networked actors primed to amplify public sector investments and catalyze change on the ground. Our selection of case studies sought to balance geographical range, political organization, health system development, and project feasibility (Table 1). We aimed to incorporate LMIC with varied childhood cancer outcomes stages of childhood cancer policy and program development. From a cross-section of potential comparators, our sample was further refined based on the strength and reliability of investigator relationships with local research partners and professional networks. The comparator countries–El Salvador, Guatemala, Ghana, India, and the Philippines–represent different geographic regions, cultural backgrounds, macroeconomic realities, and political traditions. Our analysis strove to situate and understand health system priority-setting in light of these varied contextual factors. We included two countries with shared regional realities, El Salvador and Guatemala, to retain a measure of commonality amidst diversity that might set in relief key differences responsible for variations in the national political priority for childhood cancer. Drawn from the World Bank Group Development Indicators, 2014–2016 data a $1.90 per day, 2011 PPP (purchasing power parity) b Expert estimates Political priority is established through explicit recognition of a problem by political leaders, the enactment of policies designed to address the problem, and the corresponding allocation of resources to support their implementation. To analyze the determinants of childhood cancer prioritization and policy development in the countries studied, we apply an established conceptual framework by Shiffman and Shah that has been used to analyze factors influencing political prioritization of a range of health issues at both national and global levels of governance, including maternal and neonatal health, child development, and surgical care [15, 16, 17, 18]. It considers four principal influences on priority-setting: (1) political contexts, (2) actor power, (3) ideas, and (4) issue characteristics (S1 Table)[19]. We employed this framework to balance clarity, when comparing a diverse range of health system contexts, with explanatory power, through incorporation of key domains common to a number of prevailing policy analytic frameworks. Our findings are based on literature review and in-depth interviews with key informants, guided by the Pediatric Oncology System Integration Tool (POSIT), an expert-informed, peer-reviewed instrument for analyzing childhood cancer in health system context [20]. Focal domains of analysis included: the place of childhood cancer within the broader health system and policy environment; planning and priority setting processes for childhood cancer care; and modalities of resource generation and distribution for childhood cancer programs and services. The study employed a multiple case study design [21] that emphasized policy decision-making at the national and facility levels, with attention to the institutions, actors, and processes that mediate policy and program development. Data for the analysis derived from: (1) structured searches of the published and grey literature on the health system context and childhood cancer care in participating jurisdictions, including academic articles, governmental and non-governmental documents, media sources, and organizational and industry websites; and (2) in-depth, semi-structured interviews with key informants involved in or impacted by childhood cancer policies, programs or services in participating countries. Drawing on POSIT and the analytic framework developed by Shiffman and Shah, we developed a semi-structured interview guide focused on the governance and financing of childhood cancer care (S1 Fig). Between February 15 and September 1 2017, we interviewed a stratified purposive sample of key informants (n = 68: El Salvador = 19; Guatemala = 13; India = 14; Philippines = 12; Ghana = 10) representing governmental, health care, and advocacy roles instrumental to policy processes and program development on childhood cancer in participating jurisdictions (S2 Table). We interviewed informants at all major administrative levels of the health system, from community and district positions to regional and national ones. Participants ranged in seniority, representing early-career (1–5 years; n = 18), mid-career (6–15 years; n = 29), and senior (16+ years; n = 21) levels of experience in their respective fields. Participants were identified through grey literature review, scans of relevant governmental and institutional websites, and referral by local study team members or prior interviewees, and were recruited by email, phone, or in-person through introduction from local collaborators. The size and breadth of the sample of interviewees was determined through constant comparison with existing themes as the analysis of interviews proceeded [22]. Literature searches followed a scoping review approach [23,24]. Qualitative interviews were audiotaped, transcribed verbatim, and translated into English where relevant. Relevant literature and interview transcripts were imported into and inductively coded using NVivo 11 software (QSR International, Ltd.). Independent coding of each interview was completed by one of four authors (AR, SP, SS, EA). Team workshops were held to iteratively review and compare coding systems. Random samples of the data from each country were double-coded to ensure broad consistency in approach. Drawing on a constructivist grounded theory approach, the data underwent sequential phases of coding, moving from open through theoretical codes, with constant comparative methods employed to refine codes, establish analytic distinctions, and capture emergent themes [25]. Additional interviews were conducted as needed to pursue relevant themes as they emerged, until theoretical saturation was achieved. We employed the major domains (political contexts, actor power, ideas, and issue characteristics) from Shiffman and Shah’s framework for political prioritization as sensitizing concepts to organize and guide our analysis [26]. Local investigators in each country constructively reviewed the manuscript to maximize the fidelity and reliability of our findings in country context. We obtained institutional review board approval from the Harvard T.H. Chan School of Public Health IRB, and study exemption from institutions in other participating jurisdictions, including St. Jude Children’s Research Hospital, Korle Bu Teaching Hospital, Hospital Nacional de Niños Benjamin Bloom, Tata Memorial Centre, and Unidad Nacional de Oncologia Pediatrica. Written informed consent was obtained prior to each interview. Participant confidentiality was protected through unique, anonymized identifiers assigned to each interviewee, stored in a delinked and encrypted file.