April 2018

 1st Annual Meeting of the CYSHCNet Governing Boards

The first CYSHCNet Annual Meeting was held April 11 and 12 in Aurora, Colorado at the National Coordinating Center at the University of Colorado Anschutz Medical Campus.  Director Chris Stille, MD, MPH, Associate Director Jay Berry, MD, MPH, and Network Program Manager Charlene Shelton, RN, PhD welcomed the 31 members of the governing boards, 25 of whom were in attendance and six of whom joined remotely. Other attendees included program officers from the Health Resources and Services Administration (HRSA) & the Maternal and Child Health Bureau (MCHB), CYSHCNet’s funding agency.

Ryan 4

The purpose of the meeting was to formally introduce the official governing documents of the new network to the committees and to create the National Research Agenda, the Network’s guiding research document.

The research agenda discussion, led by Ryan Coller, MD, MPH, focused on research questions submitted through a survey process that resulted in over 2,600 potential research topics. In the weeks before the meeting, Network leadership decreased the number of responses to 86 and members of the CYSHCNet executive, steering, and advisory committees rated the items according to their family centeredness, need and urgency, and research impact using the RAND/UCLA Appropriateness Method (RAM). The RAM is a method for arriving at the “collective opinion of experts”1, in this case, on the topics best suited for inclusion in a national research agenda for children and youth with special health care needs.

the boss

A second round of rating took place at the meeting, where attendees again rated the items over two days of discussion and debate. The second round of ratings will be analyzed and then focus groups will be convened with stakeholders who were not well represented in the survey, to further refine the agenda items.

Gemma - Copyholding court

The results of the ratings will be published in the fall as the CYSHCNet National Research Agenda, which will be the catalyst for innovative, large scale, multi-site projects that improve the lives of CYSHCN and their families.

1 Fitch, Kathryn, et al. (2001). The Rand/UCLA appropriateness method user’s manual.