A Virtual Space for Children with Liver Disease and Their Families

October 31, 2016

Insight
October 31, 2016

EEG

For patients suffering from rare forms of liver disease, finding other people with the same illness can be tough. Even doctors studying these illnesses can have trouble finding enough patients for their research.

Liver Space, a new Facebook application led by pediatric gastroenterologist Douglas Mogul, seeks to address these problems by linking both groups through Facebook.

“It’s designed to strengthen online communities, serving as a bridge to health care providers and a portal for conducting research,” says Mogul.

Two years ago, Mogul realized that many pediatric liver disease patients and their families were convening around liver disease Facebook pages. Colleagues at the Technology Innovation Center told Mogul he could tap into these information-hungry communities by creating an app within Facebook—essentially, a page with added functions, like physician-selected news feeds and the ability for users to directly message questions to Mogul.

Built by the Technology Innovation Center and launched in August, Liver Space is the first Johns Hopkins health app designed using Facebook’s app toolkit. Users sign up by visiting apps.facebook.com/liverspace and creating a profile. Notifications about new Liver Space content are then automatically posted to the user’s Facebook account. It also offers self-care tools, like lab results tracking and the ability to connect with others nearby who have the same disease.

In addition, Liver Space allows Mogul to reach out to members with a specific liver disease for study opportunities aimed at improving their quality of life.

“It’s an opportunity to reach people who I think are often not part of major research,” says Mogul.  The project was made possible by a Gilead Foundation grant, and Mogul has hired a social media coordinator to ensure Liver Space has new daily content. He’s now in discussions about building a similar site for people with kidney disease.