Background: The number of children and adolescents with chronic disease has increased to over 5 million, as advances in health care have led to improved survival for children with previously fatal conditions. Unfortunately, these children face numerous health and psychosocial challenges as they grow up, and the current healthcare system is not designed to optimize their care.
Proposed Solution to the Problem: The UCSF Child and Adolescent Chronic Illness Center was created to improve the lives of children with chronic illness and their families by creating a health delivery system that addresses their unique needs. Patients and families partner with care providers and researchers to develop and study new systems of care and strategies for optimizing wellness. Through this project, the project team is conducting research that is driven by patient priorities and aims to develop effective solutions that will improve outcomes for children living with diverse chronic diseases.
Objectives: The team previously completed a series of focus groups with a diverse group of patients and caregivers to identify unanswered questions about their health and healthcare. Draft research questions were generated by the participants. These need to be further prioritized and refined so that the team can develop a research protocol that can be conducted.
Activities: The team will convene patients, caregivers, and researchers in a three‐session conference series. Participants will review prior draft research questions, further prioritize them, and refine the questions so that they can be used in a real research study. There will be two in‐person workshops and one virtual crowdsourcing activity. Patients and researchers will be trained in clinical research methods.
Outcomes and Outputs (projected): The specific deliverable is a single well-developed research question with a study design and defined outcome measurements so that the team can proceed with writing a research protocol in the next phase of the project. An additional outcome is a cadre of trained and engaged patients and caregivers of children living with diverse chronic diseases who are positioned to engage in additional research activities. Ultimately, this will lead to the generation of new knowledge that leads to improved lives.
Patient and Stakeholder Engagement Plan: Patients and caregivers will be identified through the UCSF Child and Adolescent Chronic illness Center and partner organizations. This project is an extension of prior work supported by PCORI and the same individuals who attended focus groups will be invited to return to this conference series. One of the team’s patient partners is serving as a co‐investigator and another is the communications consultant.
Project Collaborators: The primary organization is the UCSF Child and Adolescent Chronic Illness Center. Partner organizations include the Benioff Children’s Hospitals’ Family Advisory Councils in Oakland and San Francisco, SF Support for Families and California Children’s Services.