Patient empowerment in tuberculosis control: reflecting on past documented experiences

Objectives To review the available published and non-published literature on patient empowerment in tuberculosis (TB) control, describe what it entails, identify possible trends and conclusions, and suggest areas both for informing policy makers and for orienting further research. Methods We searched MEDLINE and PSYCINFO databases, used World Wide Web research tools and included conference abstracts and specific project reports. Results Experience shows that operational definitions, potential barriers towards empowerment and contextual issues need to be considered. Four types of experiences were reported: (1) enabling patients to take more responsibility for their health, especially regarding adherence to treatment, (2) organizing TB patients into groups and clubs, (3) building patient-centred care in TB and general health services, and (4) using TB patients' advocacy skills to improve TB control. Conclusions Patient empowerment conceptions through interventions and studies should primarily involve TB patients themselves. Patients' activism - their role, the shape it takes and resulting effects - is insufficiently documented.