Tele-mentoring supports physicians in treating sickle cell disease
A patient with sickle cell disease (SCD) presents to a primary care provider in rural North Dakota. Because of the sparse population, this physician has not treated many sickle cell disease cases. She could find management guidelines online, or she could tap into the Sickle Treatment and Outcomes in the Midwest (STORM) TeleECHO program led by Cincinnati Children’s.
Now in its third year, STORM TeleECHO provides tele-mentoring (not telemedicine) to pediatric and adult healthcare providers (specialists and primary care providers) to improve evidence-based care of patients with SCD. This innovative program is based on Project ECHO, originally created by the University of New Mexico Health Sciences Center to increase access to care for patients with hepatitis C in rural New Mexico.
According to Lisa Shook, MA, MCHES, Hematology, and the project’s principal investigator, SCD is among the most common disorders identified via universal newborn screening in the US, with an incidence higher than that for all other genetic conditions, including congenital hypothyroidism and cystic fibrosis. There are approximately 100,000 patients living with SCD nationwide, including an estimated 15,000 patients in the Midwest.
“Complex chronic diseases such as SCD can be difficult to manage, especially for physicians with limited experience, ancillary support, and time to manage SCD-related pain and complications,” said Shook. “With this program, we’re trying to increase provider knowledge and, of course, improve the care for SCD patients.”
The STORM TeleECHO network targets providers in Ohio, Indiana, Illinois, Michigan, Minnesota, North Dakota, South Dakota and Wisconsin, but its reach also extends globally to Colombia, Canada and Sierra Leone.
“Over 70 providers have participated in the program,” said Shook. “We hope to reach more of them as word of our success spreads.”
How STORM TeleECHO works
- Providers register online at sicklestorm/echo.org and receive monthly notifications about upcoming topics that may be of interest.
- Providers use a webcam or phone line to join a monthly session from their office or clinic to join scheduled sessions that last one hour.
Each session includes a 15-20-minute didactic presentation from a curriculum based on the National Heart Lung and Blood Institute Evidence-Based Management of SCD Guidelines. Sessions also include one or two de-identified case presentations from community providers that allow for robust discussion from medical and psychosocial perspectives. Providers also receive recommendations from an expert community of practice.
STORM TeleECHO consists of a ‘hub’ team led by the STORM Regional Coordinating Center, based at the Cincinnati Comprehensive Sickle Cell Center within Cincinnati Children’s. The hub team members are multidisciplinary clinical experts that include Karen Kalinyak, MD, as medical director, Lori Crosby, PsyD, and Lisa Shook as co-directors, and Christina Bennett Farrell as project manager.
The four guiding principles of Project ECHO are:
- Use telehealth technology to build healthcare resources where they are scarce.
- Share best practices to reduce variation in clinical care.
- Use practice-based learning methods to develop specialty expertise among providers.
- Monitor and evaluate provider outcomes.
Participating physicians are earning CME credits and free Maintenance of Certification Part II credits for the American Board of Pediatrics as well as American Board of Internal Medicine.
For more information about STORM TeleECHO, or to register for an upcoming session, call 513-636-7374 or visit STORM@cchmc.org.
