The QQ Patients: Changing the rules of TB support

A patient raises a question to the group.  "I want to know: How can you adhere to the second-line treatment?  It always gives me an upset stomach." 

Another replies. "If you can bear the pain for a while, it will pass."

A third patient responds with no words. Just a rolled-eyes face of extreme skepticism.

This is not a TB patient support group in one of China's hundreds of hospitals.  This discussion is taking place on mobile phone screens. It is one of many groups of TB patients that come together to share knowledge and support on QQ, the chat and social media application that thrives in China.

These online TB groups are blossoming, and their potential is startling.  A TB patient in a rural region, equipped with a mobile phone, is just as able to have access to information and perspective as one in a large hospital in the capitol.  Patients can find words of comfort or caution,  from people who have been through the same suffering. But with the potential comes risks: An uninformed participant can spread inaccurate guidance. Participation by professionals is immensely valuable.

Recognizing the promise of these networks, CAP-TB is contributing its voice to the community. Yunnan Provincial Anti-Tuberculosis Association, CAP-TB's partner in Kunming, China, now supports two TB-patient facilitators who serve as a bridge between health professionals and the patients that discuss treatment, pain, and health options online.

Questions and answers come from all sides. "Drink lots of water," said one member in response to the question of gastric side effects. Patients discussed their use of the protective masks -- but emphasizing rumors that new patients were more contagious than older ones. The value of community may be clear to health professionals, but for a worried patient, the chance to share cannot be measured.

Posted by: CAP-TB