The creation of a useful digital health tool begins at the end — with the end user, says Douglas Mogul, a pediatric gastroenterologist. “Most people don’t understand what patients want, but you have to know what they want before they will use it for their health,” he says. This is his philosophy behind the development of a tool for young people who have had an organ transplant.
“Anyone with a transplant has to monitor their health on a continuous basis and manage medications critical to their health, as well as doctor’s appointments,” says Mogul, who hopes to bring the app to market by late 2019. “It can be especially challenging for adolescent patients who are beginning to manage all these things on their own. They are susceptible to problems of nonadherence and have higher rates of complications following a transplant.”
While recent studies show digital health tools such as mobile apps can be helpful to overall adherence to prescribed medications and behavioral changes such as exercise, studies also show people tend to use mobile apps for just a short period of time.
To explore the options for a tool, Mogul organized the first Technology and Transplants conference at The Johns Hopkins Hospital in February 2018. Medical, patient and advocacy groups convened to learn about technology to support medication adherence, how social media can help manage chronic diseases and gamification techniques to make tasks more fun.
To understand exactly what young transplant recipients want, Mogul coordinated interviews to see how technology, mobile apps and social media might support the obstacles they face in day-to-day management of their health and their transition from pediatric to adult health care providers. He is also conducting a survey to determine the type of digital tool this population would most likely use.
“Ideally, we want to build a digital health template that could be used for a number of chronic pediatric diseases,” says Mogul. “Patients with these conditions have a lot of the same experiences in managing their health.”
The second Technology and Transplants conference will occur in 2019 to review the interviews and survey data and to discuss how to best plan, implement and evaluate a new digital health tool to assist young people living with a transplant.
Read More: Giving Transplant Patients Digital Wings
Digital Health Tools for Parents
Douglas Mogul previously developed two tools based on what patients and their families need:
- PoopMD: A mobile app integrates a smartphone’s camera with color recognition software to identify biliary atresia, the leading cause of pediatric end-stage liver disease, and determine if additional follow-up is recommended.
- Liver Space. The Facebook-integrated app was designed to strengthen connections between online liver disease groups, and create a bridge to health information and health care providers for the groups.