Improving Sickle Cell Transitions of Care through Health Information Technology

September is National Sickle Cell Awareness Month


At a Glance

What: The goal of this project is to understand if and how a patient-centered, technology-based tool can improve the health of individuals with sickle cell disease (SCD) during care transitions.

Why: Those with the genetic blood disorder face several challenges, one of which is maintaining coordinated care across transitions, such as when changing from pediatric to adult care but also changing between health care providers and health care settings. An interactive electronic tool could supply a mechanism for health information sharing that is often critical and missing during care transitions.

Who: Ten focus groups will be used to gather qualitative information to better understand the needs of SCD patients, caregivers and providers. There will also be one-on-one interviews with stakeholders including state Medicaid representatives and other relevant policy makers.

When: August 2012 until May 2014

Partners: The project is funded by the U.S. 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.


As recently as 30 years ago, children with SCD usually did not survive into adulthood. Now, as a result of advances in screening and treatment, more than 90 percent of individuals with SCD reach adulthood. With longer life expectancy there are more frequent transitions of care, be it setting of care (e.g., from home-based to hospital-based care) or focus of care (e.g., from pediatric-focused to adult-focused care).

The key to successful transitions of care is effective communication, especially around the sharing of a medical history. This has been a challenge for many persons with SCD. Preliminary evidence suggests that health information technology (HIT) can be helpful for SCD and similar conditions. This project plans to explore the potential for HIT to assist with SCD health care transitions.

Project Overview

Extensive research on existing HIT, focus groups and one-on-one interviews will be used to gather information to better understand the needs of SCD patients, caregivers and providers. As a result of the information gathering, the project team will make recommendations on next steps for creating a HIT tool to assist with SCD care transitions. Recommendations will be made on design, functionality, content, accessibility, security, compatibility with electronic medical records, user interface and interactivity.

Such a tool might have patients’ pain medication schedule, for example, allowing new physicians or emergency departments to quickly call up information. The tool might interface with electronic medical records to allow for easy but secure access between hematologists, primary care physicians and emergency physicians. It could also help to remind patients when to take their medication. Developing a patient-centered tool to better facilitate these care transitions is essential to improving the overall care experience and health of individuals with sickle cell disease.

This information-gathering project, which is the first phase in a larger project to develop the tool, will conclude in May 2014.

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