Technology Improves Sickle Cell Disease Care Beyond the Clinic

February 19, 2013
By Kristina Grifantini

GlowCap works with the Vitality Health Hub to remind patients to take their medications.
Source: Vitality, Inc.
From text reminders to self-monitoring pill bottles, healthcare providers across the country are incorporating technology into efforts to improve care for patients with sickle cell disease (SCD).

Within the clinics, practitioners integrate pain plans into electronic medical records with scanners, develop databases to track patient referrals, and introduce other technologies to help deliver timely and effective care. But teams in NICHQ’s quality improvement project, Working to Improve Sickle Cell Healthcare (WISCH), have also been exploring technology to help support patients when they leave the doctor’s office.

Medicine Reminders
Sticking to a daily medication regime can help SCD patients manage their disease, but sometimes it’s hard for patients to remember to take medication, particularly if they are transitioning to adulthood and not used to managing their own care. The WISCH team in California is working with a technology that monitors when pills are removed from a prescription bottle. The hardware, called GlowCaps, fits into pill bottles and can play a reminder when it’s time to take a medication, as well as send email reminders to help patients stick to regiments.

“We found that the Glowcaps work well if the major problem is forgetting to take medication,” says Marsha Treadwell, PhD, the project director at the Northern California Network of Care for Sickle Cell Disease at the Children's Hospital & Research Center Oakland. The team also plans to test whether electronic games and apps will help support stress management of sickle cell patients.

See a clip below of Treadwell discussing the Glowcaps and other technologies:

The Tennessee WISCH team encourages adolescents to record their own voice reminders, which, similar to programming a hotel wake up call, will call the patients’ cell phones at scheduled times. Yvonne Carroll, RN, JD, director of Patients Services in Hematology at St. Jude Children’s Research Hospital, explains more:

Checking in with Families
Other teams are using cell phones and social media to connect with patients outside the hospital. The Missouri Network for Education and Treatment of Sickle Cell Disease (MONET-SCD) is using a dedicated cell phone with caller ID “Sickle Cell” to text with families. It allows them to check in on a child’s health, send reminders about developmental meetings, and answer questions a family might have. The team found that some younger families especially prefer to communicate by text.

“I send a hello or reminder about a skill we had worked on about once a week for families that are interested in texting. Families also text me if they’re going to the hospital,” says Catherine Hoyt, an occupational therapist at the Washington University’s School of Medicine Program in Occupational Therapy. (Read more about the Missouri team’s work in “Texting to Help Families with Sickle Cell Disease.”)

The Maryland quality improvement team has also made a big push to connect patients. The team’s Improving Health Outcomes and Medical Education for Sickle Cell Disease (iHOMES) network keeps patients connected through Twitter (@iHOMESnetwork) and Facebook.

“We send out recent articles or papers on SCD, tips for staying healthy, motivational and inspirational quotes, advertisements for services we offer such as finding a primary care provider or dental care, and notifications for any upcoming events,” says Lauren Whiteman, MPH, senior research data analyst of the Maryland iHOMES Network at Johns Hopkins University.

Are you using a technology to help manage your health? Tell us what works for you on Facebook and Twitter.