Sickle cell anemia (SCA) is a genetic, red blood cell condition, which damages cell walls impeding their passage through capillaries. Episodic, it is often extremely painful. It can damage organs, cause infections, strokes or joint problems. These episodes or SCA crises can be prompted by any number of environmental or personal factors.
In the US, African Americans are most commonly susceptible to SCA, but other groups can have it as well. SCA presents a variety of management problems in the best of circumstances. As is often the case, management is made even more difficult when the patient is a child. That’s what Children’s Health of Dallas, Texas, one of the nation’s oldest and largest pediatric treatment facilities faced two years ago. Children’s Health, sixty five percent of whose patients are on Medicaid, operates a large, intensive SCA management program as the anchor institution of the NIH funded Southwestern Comprehensive Sickle Cell Center.
Children’s Health problem wasn’t with its inpatient care or with its outpatient clinics. Rather, it was keeping a child’s parents and doctors up to date on developments. Along with the SCA clinical staff, Children’s Chief Information Officer, Pamela Arora, and Information Management and Exchange Director, Katherine Lusk, tackled the problem. They came up with a solution using all off the shelf technology.
Their solution? Provide each child’s caregiver with a free Verizon smartphone. Each night, they extracted the child’s information from EPIC and sent it to Microsoft’s free, vendor-neutral HealthVault PHR. This gave the child’s doctor and parents an easy ability to stay current with the child’s treatment. Notably, Children’s was able to put the solution together quickly with minimal staff and without extensive development.
That was two years ago. Since then, EPIC’s Lucy PHR has supplanted the project. However, Katherine Lusk who described the project to me is still proud of what they did. Even though the project has been replaced, it’s worth noting as an important example. It shows that not all HIE projects must be costly, time-consuming or resource intense to be successful.
Children’s SCA project points out the value of these system development factors:
- Clear, understood goal
- Precise understanding of users and their needs
- Small focused team
- Searching for off the shelf solutions
- Staying focused and preventing scope creep
Each of these proved critical to Children’s success. Not every project lends itself to this approach, but Children’s experience is worth keeping in mind as a useful and repeatable model of meeting an immediate need with a simple, direct approach.
Note: I first heard of Children’s project at John’s Atlanta conference. ONC’s Peter Ashkenaz mentioned it as a notable project that had not gained media attention. I owe him a thanks for pointing me to Katherine Lusk.