Moving from spending to investment: a research agenda for improving health care financing for children and youth with special health care needs.

Abstract Children and youth with special health care needs (CYSHCN) use disproportionately more health care resources than non-CYSHCN, and their unique needs merit additional consideration. Spending on health care in the United States is heavily concentrated on acute illnesses through fee-for-service (FFS). Payment reform frameworks have focused on shifting away from FFS, addressing health outcomes and the experience of care while lowering costs, particularly for high resource utilizers. The focus of payment reform efforts to date has been on adults with chronic illnesses, with less priority given to investment in children's health and life course. Spending for children's health is also considered an investment in their growth and development with long-term outcomes at stake, so research questions should focus on where and how such spending should be targeted. This paper discusses high-priority research topics in the area of health care financing for CYSHCN in the context of what is currently known and important knowledge gaps related to investment for CYSHCN. It proceeds to describe three potential research projects that can address these topics, following a framework informed by the priority questions identified in a previous multi-stakeholder research agenda development process. We focus on three areas: benefits, payment models and quality measures. Specific aims and hypotheses are offered, as well as suggestions for approaches and thoughts on potential implications. What's new? We provide recommendations for a research agenda that will help inform the evidence base for testing and improving health care payment reform for children and youth with special health care needs, based on recommendations using a multi-stakeholder process.