The affected communities should no longer be passive recipients of care but valuable partners with decision-making power in choices and policies that affect them.
In an editorial (1),The Lancet Respiratory Medicine expresses the general thinking in the tuberculosis discipline that a bold approach is needed to eliminate this deadly but curable disease. To do so, the author stresses how important it is to strengthen the engagement of all stakeholders: politicians, funders, medical practitioners, and civil society. The author emphasises the need to renew the commitment to support disease prevention through engagement with the most vulnerable society members (2).
As civil society members who work with vulnerable individuals and members of the affected communities, we applaud these statements. However, we urge development of concrete strategies to effectively include the key affected populations in development of plans, research, and discourse on tuberculosis. Even with good intentions, without meaningful inclusion of affected communities, enlightened absolutism could occur.
Although the editorial mentions engagement with migrants, prisoners, and the homeless, these populations are rarely, if ever, included in decision-making processes, and are treated as passive individuals. Also of concern is the fact that the editorial mentions the need to make resources reach the poorest communities and most marginalised members, and yet does not mention the need to empower and work with them, or to fight the social inequities that put these communities in situations of poverty and marginalisation, of which tuberculosis is a visible consequence.
Isolated examples of engagement with communities exist. The Community Research Advisors Group of the Tuberculosis Trials Consortium and the Global TB Community Advisory Board are examples of successfully integrating communities into the research process from protocol conception to results dissemination. Within the International Union Against TB and Lung Disease, efforts exist to improve communication with and engagement and inclusion of affected communities for all activities of the organisation, especially the planning of and participation in their annual Union World Conference on Lung Health. The TB Alliance, a product development partnership, has an integrated community engagement programme that helps give the community perspective on the research that the Alliance implements (3).
However, to really eliminate tuberculosis, patients, survivors, and affected communities have to be included from the beginning and throughout the whole process, from research design through to programmatic implementation on a regular basis in all activities to address tuberculosis. The affected communities should no longer be passive recipients of care but valuable partners with decision-making power in choices and policies that affect them. The examples should no longer be the exception. We must address the underlying issue driving the tuberculosis epidemic—inequity.
Source: The Lancet Respiratory Medicine