Skip to main content

Of the Present

Dr. Ted Liou is Facebook friends with more than one quarter of the clinic population. Each of the patients requested the friendship. Patients use the connection to ask questions in the public space about new treatments and news from the Cystic Fibrosis (CF) Center. In private conversations, patients get personalized advice from Dr. Liou, arrange for special care and sometimes just get encouragement. In several instances, Dr. Liou has intervened in dangerous situations presented by patients to their Facebook friends and prevented harm. One the other hand, patients sometimes give encouragement and support to Dr. Liou and the CF team. Unfortunately, Facebook is a commercial enterprise so that online discussions can sometimes attract intrusive advertising or unwanted attention from other Facebook members that do not understand the rigors of having CF. And, of course, Dr. Liou’s current participation is only a fraction of time that patients are online, asking questions, revealing needs and sometimes experiencing non-obvious but urgent and important health risks.

Of the Future

A private, invitation only, page for CF patients and their families would enable daily interaction with the CF Center in a protected space. Donor-supported CF team members:

  • Manage and monitor the conversation online
  • Provide quick responses to questions and concerns
  • Listen and provide a caring voice
  • Guide patients wishing to try new treatments
  • Coordinate refills and appointments

This site creates a new and natural avenue for patients to speak up and establishes another form of communication. Sympathetically listening to patient discussions might help physicians or other clinic staff respond to needs even before patients ask or even realize a need.