Project Summary

Background: Children with Special Health Care Needs (CSHCN) have chronic conditions that require more health services and related services than children without these conditions. This project is designed to address the families’ needs for care coordination through creating a statewide system that can be tested through PCOR.

Proposed Solution to the Problem: The project team will build the capacity of the existing CSHCN coalition to conduct patient-centered outcomes research (PCOR) during five regional conferences. The conferences will be in Flagstaff, Phoenix, Tucson, and Yuma, cities in Arizona that have very diverse populations. Settings will include hospital and clinic meeting rooms, university classrooms, and city venues.


  1. Build the knowledge base regarding how stakeholders will partner in developing and prioritizing a research plan for care coordination (CC) of CSHCN.
  2. Build engagement and research skills among stakeholders to apply PCOR that focuses on redesigning systems incorporating CC of CSHCN.
  3. Partner with stakeholders to develop and prioritize research needed for sharing of CC information that is HIPAA compliant, secure, and confidential for all stakeholders to use.
  4. (Long-term) Implement and disseminate system redesign strategies for CC.
  5. (Long-term) With stakeholder partnership, develop a research pathway for PCOR to examine the most effective/efficient mode of CC for CSHCN.


  1. Hold conferences in the cities mentioned above with a conference every six months to expand the current coalition and include the needs of the parents in rural Arizona for CC.
  2. Hold stakeholder meetings via telephone and Skype to evaluate outcomes from the regional conferences and plan for the next regional conference.
  3. Build on each conference by using the same methods to collect data from stakeholders and collaborators in each region. Through this format, the project team will be able to build statewide consensus on what is needed for CSHCN to conduct PCOR to address the CC needs of families and care providers of CSHCN.

Outcomes and Outputs (projected):

  1. Generate a comprehensive description of a care coordination system needed by families of CSHCN that can be disseminated statewide as well as nationally.
  2. Produce a detailed plan for how to build statewide consensus through a variety of research methods that can also be widely disseminated.
  3. Produce an outline for a PCOR funding application to test the research plan that has been developed for Arizona from the regional conferences.

Patient and Stakeholder Engagement:

  1. The project team has a core of parents of CSHCN who participate in coalition meetings. They have an equal voice in the timing, location, and agendas of the meetings and have equal input into the discussion and planning. The project will include parents of CSHCN at all regional conferences to build the coalition.
  2. Stakeholders are clinicians, payers, government representatives, and nonprofit agency representatives who are concerned with CC for CSHCN.

Project Collaborators: The team has many organizations and institutions helping to lead and support this project, including but not limited to:
Phoenix Children’s Hospital, Yuma Regional Medical Center, North Country Healthcare, University of Arizona, Arizona State University, Ryan’s Hospice House, Arizona Chapter of the American Academy of Pediatrics, Raising Special Kids, Arizona Medicaid Mercy Care, Arizona Department of Health Services, Arizona Department of Economic Security.

Engagement Resources

More to Explore...

Project Resource: Conference Agenda

Project Resource: Poster Presentation

Project Information

Elizabeth Reifsnider, BSN, MS, PhD
Gerri Lamb, PhD, RN, FAAN; Ann Marie Lyles, PhD, RN; and Bradley Doebbeling, MD, MSc, FACP, FIDSA, FNAP
Arizona State University

Key Dates

25 months


Project Status
State State The state where the project originates, or where the primary institution or organization is located. View Glossary
Last updated: February 2, 2023