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NICHQ to Help Develop New Technology Recommendations for Sickle Cell Patients

November 19, 2012

The National Initiative of Children’s Healthcare Quality is excited to announce a new collaboration with the healthcare consulting firm The Lewin Group to improve the care of people with sickle cell disease. The project, ,“Improving Sickle Cell Transitions of Care through Health Information Technology: Phase 1,” will explore developing an innovative tool to help sickle cell patients manage their care and is funded by the U.S. Department of Health and Human Services’ Agency for Healthcare Research and Quality (AHRQ).

Sickle cell disease causes red blood cells to change shape, resulting in pain and tissue end-organ damage. 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. For example, many young adult patients don’t have a primary care physician after leaving pediatric care, which makes it difficult to manage the disease effectively.

The project will study whether an electronic tool could help patients in this area. 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,” says Suzette Oyeku, MD, MPH, a project director of NICHQ’s Working to Improve Sickle Cell Healthcare (WISCH) program. “This new tool could be a smart phone app, a website or some other technology. We won’t know the best model until after the study.”

This project will make recommendations on content, sharable data, accessibility, security, compatibility with electronic medical records, user interface, interactivity, and next steps for creating the tool. Other partners of the project include Children’s National Medical Center, Cincinnati Children’s Hospital Medical Center and Nemours, who will support NICHQ and The Lewin Group in the components of developing the recommendation. The project partners will make this recommendation by researching previous technology developed for use by patients and conducting focus groups with potential users of the tool. This information-gathering project, which is the first phase in a larger project to develop the tool, will conclude in May 2014.

NICHQ will lead several aspects of the project, including a comprehensive report of project findings, as well as an information technology focus group. NICHQ’s expertise in the quality improvement of sickle cell care, as evidenced through WISCH and other efforts, will contribute to grounded, executable recommendations for the tool.

“NICHQ is delighted to continue its efforts to improve the quality of care for individuals with sickle cell disease,” says Oyeku. “Improving transition care is crucial to improving overall care for these patients.”

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