Large-scale investment in precision medicine incentivized by the 21st Century Cures Act, as well as other rapidly growing data networks of networks such as ORIEN and APOLLO connect health systems, industry partners, and researchers to the genomic, physiologic, diagnostic, treatment, research, and mobile health data of millions of individuals. Precision medicine is a sociotechnical learning health system, defined by dynamic, collaborative relationships between people, processes, policy and technology in complex environments. In sociotechnical systems, both technology and social settings mutually co-construct one another, so while technology is often a critical component of what constitutes a complex system in healthcare, just as important are the social commitments to integrate standards and usage into practice. For example, academic medical centers are adopting precision medicine methods and technologies and are making decisions based on whether their goal is to increase capacity for quick and efficient clinical management, investigational trials, or large-scale basic research. Local goals shape subsequent choices about what to sequence (whole genome, targeted panels, or whole exome), how to sequence (library preparation methods, platform, manufacturer), and logistics (speed, volume). These choices, in turn, have implications for people working in the field, the cooperative processes they engage, the policies they follow, and downstream technological developments. The cutting-edge science driving precision medicine requires infrastructure of learning health systems at multiple scales (individual, clinic/lab, organization, and societal) to transform big data to knowledge (e.g. BD2K), move new knowledge into practice and evaluate subsequent health outcomes. Nearly 80% of precision medicine programs are focused on cancer, with 35% of precision medicine programs being run at academic medical centers. The proposed research will capture this experience by examining the sociotechnical ecosystem of learning in precision oncology programs at five academic medical centers at public universities enabling a network of networks, cross-systems analysis to identify gaps that can be addressed by policies or practices. The proposed project will map the sociotechnical of learning ecosystem for precision oncology by identifying the actors (people, organizations), technologies, processes, and policies that are operating across the learning cycle (data collection, analysis, knowledge generation, outcome evaluation) and functioning at multiple scales (individual, group (clinic/lab), organizational, and societal) in five precision health practice sites nationwide (Aim 1). We will then conduct an iterative design process to develop a sociotechnical maturity model for precision oncology, adapting an informatics approach to describing the progression and developmental milestones of systems to include the social aspects that are often considered separate from the technical (Aim 2). Our comprehensive approach will make invisible roles visible, and clarify opportunities for regulatory modernization and data-informed governance.
The proposed project will map the sociotechnical ecosystem for precision oncology by identifying the actors (people, organizations), technologies, processes, and policies that are operating across the learning cycle (data collection, analysis, knowledge generation, outcome evaluation) and functioning at multiple scales (individual, group (clinic/lab), organizational, and societal) in five precision medicine practice sites at academic medical centers. We will then conduct a comparative analysis of maps and an iterative design process to develop a sociotechnical maturity model for precision oncology, adapting an informatics approach to articulate not only maturity levels but also processes towards developmental milestones .
