Partnering to Advance Health and Well-being of Children with Medical Complexity and their Families

Background: Children with medical complexity (CMC) have severe, chronic, often life-threatening conditions involving multiple organ systems. Many have functional and cognitive impairments, depend on medical equipment for survival, have multiple medical specialists/therapists, have special education needs, and frequent hospitalizations/emergency department visits. Most are cared for at home by parents or other family caregivers, but also by in-home nurses and other staff. CMC are approximately 1% of the US pediatric population. Because families have a strong voice in the outcomes that matter most to them, without their partnership in patient-centered outcomes research and comparative clinical effectiveness research (PCOR/CER), researchers can miss valuable insights into why interventions succeed or fail in real-world settings.

Proposed Solution to the Problem:  This project aims to bring together two groups to partner in fostering engagement in PCOR/CER: one, an already-engaged group of stakeholders currently involved in quality improvement efforts focused on health services coordination for CMC, and two, health services researchers working in this field of CMC as part of a national research network. Through purposeful, planned engagement activities, a collaboration to move PCOR/CER for CMC forward will be developed.

Objectives:

1. Formalize the collaboration between child health researchers, families of CMC, and other relevant stakeholders to create and sustain engagement that facilitates innovative PCOR/CER research.
2. Create a research agenda that is centered to CMC and families through refining and adding to the priorities outlined in a previous research agenda that reflects our engagement model and is poised to lead to innovative PCOR/CER. 
3. Develop strategies to enhance literacy around research for families of CMC and stakeholders, and, for researchers, around engaging CMC and their families for shared development of PCOR/CER.

Activities: Existing PCORI tools will be adapted to guide the engagement process and train stakeholders on PCOR/CER. An existing research agenda, created with the broader group of children with special needs as a basis for regular, structured discussions to elicit priorities on research areas, preferred methodology and patient-centered outcomes, will also be used. These resources will be augmented with qualitative interviews and a process to rank items to quantify priorities.  The team will then draft and finalize a research agenda specific to PCOR/CER for CMC.

Projected Outcomes and Outputs: The team will collect data on a range of engagement outcomes. The primary outputs for this proposal will be the research agenda and adapted Engagement Guide and research training tools.

Patient and Stakeholder Engagement Plan: The team will be working with a group of stakeholders already convened as part of a national quality improvement collaborative, which will meet monthly. In addition, two parent partners experienced in working with this group and in research projects will be part of the team. 

Project Collaborators: The team will collaborate with the Children and Youth with Special Healthcare Needs National Research Network, Family Voices, and the Colorado Team for the Collaborative Improvement and Innovation Network (COIIN) to Advance Care for Children with Medical Complexity.