Personalized Cancer Follow-Up Care Pathways: A Delphi Consensus of Research Priorities

Abstract

Development of personalized, stratified follow-up care pathways where care intensity and setting vary with needs could improve cancer survivor outcomes and efficiency of health-care delivery. Advancing such an approach in the United States requires identification and prioritization of the most pressing research and data needed to create and implement personalized care pathway models. Cancer survivorship research and care experts (n = 39) participated in an in-person workshop on this topic in 2018. Using a modified Delphi technique—a structured, validated system for identifying consensus—an expert panel identified critical research questions related to operationalizing personalized, stratified follow-up care pathways for individuals diagnosed with cancer. Consensus for the top priority research questions was achieved iteratively through 3 rounds: item generation, item consolidation, and selection of the final list of priority research questions. From the 28 research questions that were generated, 11 research priority questions were identified. The questions were categorized into 4 priority themes: determining outcome measures for new care pathways, developing and evaluating new care pathways, incentivizing new care pathway delivery, and providing technology and infrastructure to support self-management. Existing data sources to begin answering questions were also identified. Although existing data sources, including cancer registry, electronic medical record, and health insurance claims data, can be enhanced to begin addressing some questions, additional research resources are needed to address these priority questions.