Improving Sickle Cell Transitions of Care Through Health Information Technology

The use of health information technology (IT) has been shown to be helpful in improving communication needs of those with chronic diseases, including sickle cell disease (SCD), and to improve transitions in care. People with SCD experience multiple transitions of care as a result of the disease’s chronicity and the frequency of acute and chronic events requiring care. For youths with SCD there are two important transitions that occur: the transition from home to the emergency department (ED) in the context of an acute episode; and the transition from the pediatric health care setting to the adult health care setting for ongoing chronic care management. These transitions are more likely to be successful when accurate health information is communicated effectively and tailored to the type of transition taking place.

This project conducted an environmental scan, held focus groups, and conducted key informant interviews in order to develop recommendations for the design and functionality of a health IT-enabled tool designed to aid adolescents and young adults with SCD during transitions of care.

The project objectives were to:

• Gain the necessary background knowledge, including qualitative information from key stakeholders, to establish a set of requirements that would guide the design and development of a health IT-enabled tool in future phases of work that meets patients’, families’, and providers’ needs to aid adolescents and young adults with sickle cell disease during transitions of care.
• Develop an understanding of the environmental context, current facilitators and barriers, health data use, and needs of key stakeholders affected by sickle cell disease, including patients, families, and providers.

The team followed recommendations to narrow the development of the tool to supporting the most important care transition that impacts patients and families affected by SCD: from the home to the ED. Recommendations for the tool include that the tool should operate on a smartphone, tablet, or iPad. It should be simple to use, sleek, and modern in appearance. The tool should provide a succinct summary of the individual’s important health information, both static and dynamic information. IT developer and patient focus group participants recommended that the tool be fun to use and engaging, and require minimal data input from users. Finally, the team recommended that the tool not be tethered to a patient’s electronic health record for a given provider. Instead it should be cloud based to allow it to participate in health information exchange and pull data from multiple sources and providers.