The U.S. health system, historically, has not been well equipped to serve children and youth with special health care needs (CYSHCN). Children with special health care needs are those who have or are at increased risk for a chronic physical, developmental, behavioral, or emotional condition and who also require health and related services of a type or amount beyond that required by children generally. Fundamental gaps in health services leave many CYSHCN and families with unmet healthcare needs; extraordinary and unnecessary caregiving burdens; stress; and suboptimal health, wellbeing, and quality of life. CYSHCN and their families deserve better.
Network research holds great promise for improving health systems for CYSHCN in a way that enables learning across multiple sites and systems, and creation and application of new knowledge that is nationally generalizable nationally and across diverse populations. In 2017, the U.S. Maternal and Child Health Bureau (MCHB), Health Resources and Services Administration (HRSA) entered into a Cooperative Agreement to establish a Health Systems Research Network for CYSHCN to promote and conduct this research. On September 1, 2017, CYSHCNet was born.
CYSHCNet Guiding Principles
The Children and Youth with Special Health Care Needs National Research Network helps CYSHCN and their families by advancing knowledge and implementation of optimal health systems through innovative, rigorous multi-site studies, far-reaching dissemination of findings, meaningful partnerships with families, and strong training of emerging CYSHCN investigators.
2018 Vision Statement: To be the pre-eminent engine for creating and promoting excellence in national CYSHCN research, bringing expert investigators together with family leaders and young investigators, to improve the health, wellbeing, and quality of life of CYSHCN.
Our guiding vision for family engagement is “nothing about us without us.” All activities of CYSHCNet will be led by ongoing partnerships between professionals and skilled youth and family leaders who reflect the diversity of the communities they represent, with the aim of improving health-related outcomes for CYSHCN by developing better policies, practices, and evidence base.
To achieve the vision, CYSHCNet provides the leadership and infrastructure to:
- Integrate and align CYSHCN experts ;
- Vest authority in and integration of youth and family leaders into research projects;
- Establish and maintain a CYSHCN national research agenda to catalyze investigation;
- Conduct rigorous multi-site health systems research on CYSHCN;
- Disseminate research findings to inspire health system improvements;
- Enhance research training of emerging CYSHCN investigators.
The Network strongly supports the principle of diversity. We encourage participation from women, persons of color, persons with disabilities, and people who identify as LGBTQ. The Network is committed to diversity and equality in representation on all boards and committees. We are committed to accommodating special needs, including making arrangements for access and comfort for participants with physical disabilities, and providing materials in multiple languages.
The following principles, taken from MCHB’s Six Core Outcomes for systems of care for CYSHCN, guide the research:
- Improvements in delivery of comprehensive, coordinated care within a family-centered medical home, particularly for CYSHCN from vulnerable and underserved communities;
- Impact of family and youth’s engagement and leadership – at all health system levels – on access, coordination, and quality of care;
- Effective transition of CYSHCN from pediatric to adult health care;
- Care management models to integrate care for children with medical complexity;
- Financing and payment initiatives that will best enable high quality of care for CYSHCN.
|Create a national, family-engaged network
|· Integrate and train families and align CYSHCN experts.
· Develop and share valuable CYSHCNet assets.
· Vest authority in youth and family leaders at all levels.
· Build capacity for CYSHCN research
|Advance knowledge of
optimal health systems for CYSHCN
|· Establish a national research agenda to catalyze investigation.
· Conduct rigorous multi-site health systems research on CYSHCN.
· Disseminate findings to inspire health system improvements.
· Sustain and scale research activities with external funding.
|· Enhance research training of emerging investigators.
· Build strong intra and cross-institutional coaching relationships.
· Spark emerging investigator projects with CYSHCNet funds.
The overarching goal of the CYSHCN National Research Agenda is to advance knowledge of and to optimize health systems for children and youth with special healthcare needs.
Specifically, the Agenda aims to:
- Prioritize the most important health system themes and questions facing CYSHCN and their families, the pediatric healthcare professionals caring for these children, and the relevant stakeholders;
- Define the research goals related to these questions that are felt to be of greatest importance; and
- Formulate a CYSHCN national research agenda based on these findings.
To develop the agenda we solicited input on research agenda domains and specific research questions from multiple stakeholders, using on-line surveys and semi-structured interviews. We organized and interpreted the results of this work and then prioritized topics to incorporate and highlight into the agenda, using the RAND-UCLA Appropriateness Method. The agenda will be used by health system researchers and policy-making organizations throughout the U.S. and beyond to optimize care for CYSHCN.
The National Research Agenda is reviewed bi-annually for changes in the field that require updating the agenda.