The goal of our research program is to develop and test innovative health information technology solutions to optimize comprehensive, coordinated and equitable care for children with chronic conditions. We are achieving this goal by:
- Using user-centered design principles to develop and test family-facing technologies to strengthen access and coordination between families and their child’s care team.
- Defining and measuring quality of care outcomes that are meaningful to families.
- Investigating how health information technology can reduce disparities rather than widening them.
Cloud Care is an online care coordination tool designed to improve coordinated care for children with medical complexity.
All care team members who have access to Cloud Care can collaboratively review and edit a child’s health information regardless of who they are and where they provide care.
We designed Cloud Care from the ground up by engaging parents, guardians and healthcare providers in each and every step of the development and testing process.
We hope Cloud Care will be a tool that families can use to bridge care between different settings such as hospitals, clinics, schools, developmental services, community agencies and behavioral health organizations.
We are currently testing the feasibility and acceptability of Cloud Care. As families and providers engage with the tool, we use their feedback and experiences to continuously make Cloud Care better.
Enrollment status: We are currently recruiting and enrolling families for our study. Please send us an email at firstname.lastname@example.org if you have questions about this research or are interested in participating.
Seattle Children’s Quality of Care Evaluation Program
The Quality of Care Evaluation Program (QCE), a part of the Patient Reported Outcomes Program (PRO), is made up of a team of people who collect survey information from you to help Seattle Children’s provide better care to patients and families. Family participation in the QCE Program helps clinicians, quality improvement leaders and researchers identify what matters to patients and families and helps us find opportunities to improve the quality of care we provide at Seattle Children’s.
We can share non-identifiable information with quality improvement teams to bring the patient and family voice into improvement work. Quality improvement teams can track these data over time to see if their improving care in the eyes of patients and families.
For families who agree to participate in the QCE Study, we store survey response in a database for researchers to use so they can answer important questions about:
- How to improve the quality of care that patients and families receive?
- How do patients and families feel about specific tests, treatments or therapies?
- Do certain tests, treatments or therapies improve outcomes that are meaningful to patients and families?
Families: For more information about the QCE Program and how you can participate in either the program or PRO QCE study, please click on the links below. If you have questions about the QCE, please email us at PRO@seattlechildrens.org.
- Quality of Care Evaluation Program Information Sheet for Families (PDF) (Amharic, Arabic, Oromo, Russian, Simplified Chinese, Somali, Spanish, Tigrinya, Traditional Chinese, Vietnamese)
- Quality of Care Evaluation Program Research Study Information Sheet for Families (PDF) (Amharic, Arabic, Oromo, Russian, Simplified Chinese, Somali, Spanish, Tigrinya, Traditional Chinese, Vietnamese)
Pediatric Transition Experience Measure
The Pediatric Transition Experience Measure (P-TEM) is a brief, 8-item parent-reported outcome measure to assess hospital-to-home transition quality from the family perspective. The measure was developed through qualitative studies to identify family needs during hospital-to-home transitions, robust psychometric testing, and validation testing with other process and outcome measure of pediatric hospital-to-home transition quality. There are no costs associated with using this measure.
Please email Dr. Arti Desai for a copy of the P-TEM user manual at email@example.com.
Equity in Digital Health
Telehealth Experience Survey
In collaboration with Seattle Children’s Center for Diversity and Health Equity and national partners, we are conducting a quality improvement project and research study to understand access to telehealth barriers among families who receive specialty care at Seattle Children’s and family experiences with telehealth. Our goal is to inform innovations in patient-facing health information technologies that are grounded in equity and will help reduce health disparities instead of widening them.
Dr. Desai has authored dozens of research papers. View a complete list on PubMed.