Providing a global analytics resource and surveillance system
The St. Jude Global Childhood Cancer Analytics Resource and Epidemiological Surveillance System (SJCARES) provides a new system to continuously identify, target and monitor the vital health metrics that impact patient outcomes while simultaneously advancing our practical understanding of global childhood cancer epidemiology. With this approach, we can optimize the utilization of valuable resources, and together improve the quality of childhood cancer care delivered worldwide.
SJCARES is a new philosophy for data capture in low- and middle-income country (LMIC) settings that helps collect the information your hospital and research groups need. Evidence-based tools that require limited data will allow for maximum productivity from your management team. SJCARES will allow us to establish global standards for comparison over time and between groups.
The Registry is a hospital-based pediatric cancer registration and reporting system. It applies a child-centered approach that involves collecting and providing cancer epidemiology data.
PrOFILE provides a full evaluation of health-service delivery so that facilities can develop individual improvement plans for their institutions.
Systems works to integrate healthcare systems and policies in a distinct region. It provides country-level suite of tools to support cancer control planning.
Policies is a tool suite designed to appraise the health policy environment to scale-up childhood cancer control via evidence-informed policy interventions and optimize national health and cancer control planning inclusive of children and adolescents with cancer.
The St. Jude Global Adaptation Framework (Figure 1 below, left panel) acknowledges that adoption of evidence-based interventions into practice requires concurrent development of practice-based evidence. In our framework this entails considerable active, cyclical adaptation of treatment and supportive care practices, which leads to practice-based evidence through surveillance of clinical, service, and implementation outcomes, the quality of care being delivered, and the actions taken to address areas in need for improvement. The service delivery-centered cyclical adaptation (circle in Figure 1, left panel) continuously generates the next frontier of improvement in clinical services desirable at the facility or network of facilities caring for children with cancer. Finally, the framework acknowledges that improvements in practice and service delivery occur in the context of countrywide health systems planning and policy monitoring, which have their own cyclical patterns and enablers (Figure 1, rectangle).
The SJCARES Platform Toolkit (Figure 1, right panel) includes six tools. The ARIA Guide allows adapting treatment to local resources in a standardized fashion, the Registry allows monitoring patient level outcomes, and PrOFILE allows assessing the quality of the care that institutions deliver and prioritizing the areas of opportunity. The St. Jude Global Packages represent solutions for intervening and improving care locally and informing implementation globally. The Systems and Policies tools support health systems planning and prioritization and policy monitoring and analysis, respectively. These tools serve as points of engagement for the St. Jude Global Alliance member institutions and opportunities for collaboration for St. Jude Global with a broad range of stakeholders worldwide.