Community Contribution to TB Care: Practice and Policy

The purpose of this 170-page document is to explore community participation in primary health care - specifically, in tuberculosis (TB) programming and policy. Offered by the World Health Organization (WHO), the report provides background, experiences, and policy recommendations in an effort to help National TB Programmes (NTPs) and community groups collaborate effectively to improve the delivery of TB care. It emerges from the "Community TB Care in Africa" project (conducted in 8 districts in 6 countries severely affected by TB/HIV - Botswana, Kenya, Malawi, South Africa, Uganda and Zambia) - as well as reviews that WHO has commissioned in Asia and Latin America. WHO here brings together several sources of information on experiences of community contribution to TB care. The annexes include a detailed practical "how-to" guide (based on the approach developed in Uganda) for conducting, reviewing, and then implementing the directly-observed treatment, short-course (DOTS) strategy at district level, incorporating the community contribution to TB care as part of district NTP activities. In addition, a guide for TB treatment supporters is provided.

The communication strategy outlined here is defined as an "inclusive health services approach", which includes the mobilisation of community members to take an active part in the delivery of health services. The principles guiding the establishment of partnerships with the community are those of subsidiarity, solidarity, and responsibility:

• Subsidiarity - Following a process of discussion and acceptance by all parties, a higher institution (e.g., government) hands responsibility to the community for what the community can accomplish by its own enterprise;
• Solidarity - Citizens express the need to be united, to share the needs and problems of others, and recognise and defend the dignity of each individual; and
• Responsibility - In exercising their rights, individual citizens and social groups have regard for the rights of others, do their own duties to others and seek the common good of all.

WHO stresses that community contribution to TB care is explicitly a contribution to, and not a substitute for, NTP activities. However, among the communication-related ways in which communities may contribute to TB care are: patient, family and community education, as well as lobbying for government commitment to TB control and working to increase accountability of local health services to the community. In fact, globally, there is substantial experience of community involvement in the provision of health care; in many developing countries, community participation is extensive as a key principle of primary health care. Examples of types of involvement include: community representation on hospital boards, community advisory boards to health services, community control of health services, and community volunteer activity at all levels (e.g., at treatment programmes operating through local health centres).

WHO's TB approach - as detailed in this document - is based on these experiences, and the recognition that the substantially increased TB case load that has been fuelled by the HIV epidemic means that NTPs in many parts of the world can no longer cope if they have to rely on government health services alone for the provision of care. For instance, the "Community TB Care in Africa" project showed that in a variety of settings, the provision of community care, including the option of community DOT, was typically well received. Treatment outcomes among patients cared for in the community were either equivalent to or (more frequently) improved, compared with patients treated through health facilities. Treatment success rates often reached the global target of 85% (taking into account the frequently high TB case fatality in high HIV prevalence populations). Costs associated with community-based DOT were typically 40-50% lower than health facility-based care, and cost-effectiveness of community-based DOT was approximately 50% higher.

According to WHO, in response to these findings, more NTPs are beginning to introduce and expand implementation of community-based DOT, as part of routine NTP activities. For instance, in Latin America, community development and community health organisations have undertaken case finding, community-based DOT, defaulter tracing, support group formation, and advocacy with local governments. (There are, however, very few data on the impact of community involvement on treatment outcomes.) In Asia, there are examples of extensive community involvement in TB care based on a network of community-based non-governmental organisations (NGOs) of various sizes. Treatment outcome data usually show cure rates of 80-90% where NTPs work with these NGOs.

Urging that NTPs, health service providers, and communities should take steps towards
harnessing community contribution to TB care, the authors of this document offer a number of policy recommendations. Among their communication-related suggestions:

• Rather than setting up new systems, groups and organisations, existing community groups and organisations (e.g., HIV/AIDS community organisations) should first be approached to determine how they might be able to make a contribution to community TB care.
• Effective community contribution to TB care, especially community-based DOT, requires a robust reporting system in addition to access to laboratory facilities and a secure drug supply, as well as regular support, motivation, instruction, and supervision. The latter involves close attention to the selection of community volunteers and the way in which they contribute to TB care; collaboration between the NTP, TB patients, community representatives and community group leaders may help in this regard.
• Regular audit and reporting of results is important to monitor and evaluate community contribution to TB care in each programme.