Using the New National Health Systems Research Agenda for CYSHCN

Full Description: Research on health systems that support children and youth with special healthcare needs (CYSHCN), their families, and service providers, while increasing, has not been coordinated or systematized, resulting in studies that do not meet their needs. A cohesive national research agenda, with input from multiple stakeholders, is an important first step in identifying and promoting research topics of highest priority. With this end, HRSA/MCHB entered into a cooperative agreement in 2017 with a consortium of 12 research groups, centered at the University of Colorado, to form a national health systems research network for CYSHCN. The new network, called CYSHCNet (www.cyshcnet.org), promotes, conducts, and coordinates family-partnered health systems research to improve health and healthcare for CYSHCN and their families.

As a first major project, CYSHCNet convened a diverse national multistakeholder group of clinicians, parents, researchers, and health policy experts to suggest important health systems research topics. The RAND Appropriateness Method (RAM) was used by this group to prioritize and narrow the list of topics. This list was further developed with groups not included in the initial process, such as youth, to ensure as wide a view as possible. The resulting list of topics was sorted by priority as determined by participants; 17 "highest priority" themes were grouped into 6 areas.

During 2020-21, CYSHCNet members developed 7 papers describing each of the major priority areas in the national research agenda, to be published as a supplement to the Academic Pediatrics journal in early 2022. The papers describe what is currently known, as well as major knowledge gaps in each area. Each paper proposes 3 research project ideas that can be used as a starting point to further knowledge by research teams, funders, parent advocacy and policy groups to investigate topics of interest and importance to their constituents. A future interactive platform on the CYSHCNet website will allow users to go through each paper’s main points and use the information for their own research.

This proposed workshop provides a forum for attendees to learn about how to use the CYSHCN national health systems research agenda, with explanations and discussion from network leaders followed by several examples of how different stakeholder groups might use the agenda to develop and promote research in high-priority areas. After a very brief overview of how the agenda was developed, we will describe each priority area and topics within it, then an example of a potential research project from the standpoint of each of four possible users: researchers, parents of CYSHCN, research funders, and health policy groups. Attendees will have ample time to ask questions about using the agenda and discuss development of research projects in their areas of interest and how they might be aligned with and advance the agenda.

Abbreviated Description: In 2017, HRSA/MCHB and a national consortium of research groups formed a national health systems research network for children and youth with special health care needs, CYSHCNet. As a first major project, CYSHCNet developed a national health systems research agenda, using a multistakeholder priority-setting process, to focus and promote research in this area. The CYSHCNet team wrote 7 papers describing the national research agenda, to be published as a supplement to the Academic Pediatrics journal in early 2022. This proposed workshop will provide a forum to learn about how to use the research agenda, with an overview from network leaders followed by several examples of how different stakeholders might use the agenda to develop and promote research in high-priority areas.