Improving Sickle Cell Transitions of Care Through Health Information Technology
WHAT: The first phase of a project that aims to develop a technology-based tool to aid adolescents and young adults with sickle cell disease during transitions of care, including from outpatient to inpatient care and from pediatric-focused to adult-focused care. The purpose of Phase 1 was to understand if and how a technology-based tool can improve the health of individuals with sickle cell disease during care transitions and establish a set of requirements that can guide the design and development of this tool.
WHO: The project engaged 100 in 10 focus groups as well as one-on-one interviews with stakeholders including state Medicaid representatives and other relevant policy makers.
WHEN: August 2012 until May 2014
FUNDER: The project was funded by the US Department of Health and Human Services’ Agency for Healthcare Research and Quality (AHRQ). Partners for the project include healthcare consulting firm The Lewin Group, Children’s National Medical Center, Cincinnati Children’s Hospital Medical Center and the nonprofit children’s health organization Nemours.
NICHQ'S ROLE: Conducted IT developer focus groups, an environmental scan and wrote a final recommendations report, which incorporated the findings from all of the project partners’ focus group reports and the environmental scan.
Read the recommendations for tool development in the project report.