Since the 1978 Alma Ata Declaration, the participation of people in, and their contribution to, the development of health systems has been recognized as central to primary health care and accepted as an essential element of many public health interventions. The health reforms of the 1990s have given somewhat less attention to community participation and social values in health system development, focusing more on technical, economic and managerial factors.
The challenges posed by major epidemics such as HIV/AIDS, TB and malaria, and the role civil society has played in helping individuals and families to cope with them, have certainly contributed to make people and health policy-makers more aware of the essential and complementary role that communities can play in ensuring high-quality patient care.
Effective partnerships between health services and the community may facilitate access by bringing services to people's homes, and reducing the cost of care-seeking for patients and health services as well as the cost of workload for staff. Carefully designed community and/or patient involvement initiatives also facilitate patient and community empowerment. Through the involvement of local communities, education on relevant health issues and stimulation of change in health-related behaviour, communities become increasingly knowledgeable and self-reliant.
The empowerment of patients and communities requires knowledge of individual rights and responsibilities, the ability to exercise them at social and political levels, access to information and the ability to utilize knowledge and skills as needed. The Patients' charter for tuberculosis care (the Charter) sets out the rights and responsibilities of patients. The rights concern care, dignity, information, choice, confidence, justice, organization and security. The responsibilities cover sharing information, adherence to treatment, contributing to community health and showing solidarity.
The Charter identifies ways in which all stakeholders may work together in an open and positive relationship. While its basic principles are universal, cultural differences may influence the roles expected of health professionals and patients, and these should be taken into consideration when adapting international recommendations to the national setting. The establishment of an effective collaboration between health services and society often requires building the capacity of communities and civil society organizations, fostering a continuous dialogue and involving them from the start in designing, planning, implementing and evaluating community initiatives.
Effective community and patient involvement yields positive results, such as improved case-finding and treatment outcomes, raised awareness concerning the nature of the disease and the availability of effective treatment free of charge, or general health promotion. To be successful, community and patient involvement initiatives should be designed and implemented with community members involved as equal partners.
26.1. Key steps in implementing initiatives for community and patient involvement
26.1.1. Policy guidance
The development of guidance for policy involves:
In countries with no existing initiatives to involve communities, i.e. where the initiative to set up such activities comes from the central level, it is important to have policy guidance based on a national situation analysis. This approach promotes community ownership of the initiative, and encourages the community's active involvement and shared responsibility for health.
The policy guidance should describe a process of involvement of local communities and tuberculosis patients, and should introduce the use of indicators of community involvement, such as participation in planning, support and evaluation of the intervention, role in improvement of case detection and treatment adherence, impact on stigma and discrimination, promotion of healthy lifestyles and quality of care as perceived by patients and their families.
26.1.2. Advocacy and communication
Activities for advocacy and communication involve:
advocating at central level and locally with different stakeholders (health managers, politicians, community leaders, etc.) for TB control and community involvement;
designing communication tools tailored to the local context.
Presenting the initiative to relevant officials at the central and local levels is an important step in setting up community-based activities. This encourages involvement of all stakeholders as well as political and financial support. Communication tools for promoting messages on TB will depend on the target population and the availability of resources. To ensure that the content of the communication material is tailored to the local context, it should be developed with the community and pretested in the target population (see also Chapter 27).
26.1.3. Capacity building
Building the capacity of human resources involves:
quantifying the shortage in human resources and identifying solutions;
developing training material for health staff and local communities and conducting regular training;
creating partnerships with ongoing community-based initiatives (NGOs, faith-based organizations, community-based organizations).
Capacity building and training of people involved in the initiative, within and outside the health sector, are essential. Training should take into consideration the roles and responsibilities of different stakeholders. It is important to discuss with the community their future role, with the aim of strengthening both the community and the health system. Cured TB patients are often willing and motivated to be involved in TB control activities such as treatment support and combating TB-related stigma. Setting up partnerships with ongoing community-based initiatives in the area (NGOs, faith- and community-based organizations) has proved, in most countries, to be more sustainable and cost-effective than creating parallel systems.
26.1.4. Addressing special challenges
The challenges of TB/HIV, MDR-TB, and special groups and situations involve:
At national and local levels, experience has shown that community involvement can make a valuable contribution to addressing special challenges such as TB/HIV, MDR-TB, controlling TB among indigenous populations or ethnic minorities, in congregate settings, etc. (see Chapter 25).
26.1.5. Ensuring high-quality services at community level
Ensuring the high quality of services at the community level involves:
identifying the range of services available at community level;
ensuring an adequate referral system; identifying people (e.g. public health workers, community representatives or volunteers) who will provide a link between health services and local communities/patients;
providing regular support to community-based activities.
A routine supervision system to monitor and support the services and care provided at community level should be established. Motivation of the involved community members is encouraged by regular support.
The range of services provided at community level should be tailored to community and patient needs, rather than to the convenience of the health services. In settings where there is no existing community involvement initiative, it is important to identify people who are able to provide an effective link between health services and local communities.
26.1.6. Budget and financing
Measures for budget and financing involve:
identifying a comprehensive list of expenditures at all levels related to community involvement;
ensuring that sufficient funds are available for community involvement (e.g. ensure that such costs are included in local health budgets).
Resources for community-based activities should come from different sources, and not exclusively from the ministry of health budget. External (such as the Global Fund) and internal sources of funding (local partners providing ongoing support) should also be explored. In settings where the community is involved in a range of health issues and services, duplication of budget lines and activities should be avoided.
26.1.7. Monitoring, evaluation and supervision plan
The development of a monitoring, evaluation and supervision plan involves:
Communities should participate in the assessment of their own contribution and that of the health services. The data collected should be limited to the essential information that will be analysed and used for assessing services and community involvement. Indicators to monitor community involvement should reflect organization, representation, perceived quality of services and sustain-ability. Patient satisfaction, TB-related knowledge and TB-related stigma may be assessed through a KAP (knowledge, attitudes and practices) survey every one or two years.
26.1.8. Operational research
Planning for operational research involves:
Operational research may be required to address specific operational issues and improve community involvement. Both qualitative and quantitative research methods should be considered when assessing the outcome of activities as well as perceptions and motivation at the community level.
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