Aiming to Create New Knowledge
Charlene Shelton, RN, MPA, PhD
CYSHCNet National Research Network Program Manager
The U.S. health system has not been well equipped to serve children and youth with special health care needs (CYSHCN), especially those with complex medical conditions. While there have been groundbreaking advances in diagnostic tests, medical treatments, procedures, and therapies for many CYSHCN, fundamental gaps in health services remain. In the words of a parent: “I think that for all of us who have children with special needs, it’s difficult. Because we always have to be looking (for services). (T)hey never say, ‘Hey, we have this here for your son.’ We always have to be looking and looking . . .” Moreover, while health systems research for CYSHCN has increased recently, there is no coordinating structure or framework for research about this important population.
Believing that CYSHCN and their families deserve the best possible health care, the CYSHCNet National Research Network was founded under a cooperative agreement with the Maternal and Child Health Bureau and the U.S. Health Resources and Services Administration in September 2017. CYSHCNet has a large, multistakeholder leadership structure, including parents as partners at all levels, to promote a research agenda with potential impact across a wide range of populations. CYSHCNet intends to create new knowledge that strengthens the evidence for health system structures, then to process, identify, and disseminate the ones that help CYSHCN the most.
Driving CYSHCNet’s work is a national research agenda that will be published by early 2019. The agenda was generated through a rigorous process. Using the RAND/UCLA Appropriateness Method (RAM) as a core activity, over 30 stakeholders came together to prioritize 700 topics that were submitted by multidisciplinary professionals and patient/family representatives from throughout the U.S. The agenda prioritizes the most important health system themes and questions facing CYSHCN and their families, the pediatric health care professionals caring for these children, and relevant stakeholders; defines the research goals related to these questions that are of greatest importance; catalyzes innovative multisite research projects; and creates high-level collaborations based on shared objectives.
A strong belief in family participation is at the core of the network’s research priorities. A unique youth and family engagement process ensures that youth and family leaders are an integral part of every study and are compensated for their time and expertise. Family leaders serve as advisers to the network through their involvement with Family Voices, a leading national advocacy organization for families of CYSHCN.
Network leaders are also committed to training the next generation of interdisciplinary CYSHCN investigators through the Emerging Investigator Guided Research Program. The 12-month program includes targeted mentoring, a research grant, and an educational component. In its first year, the network awarded research grants to four young investigators from around the U.S.
Focusing on research that specifically targets the health systems that CYSHCN and their families depend on for health care will lead to an increased body of knowledge that will improve the health, quality of life, and well-being for CYSHCN.
For more information about the CYSHCNet National Research Network, go to cyshcnet.org.