Stop TB Strategy - Component 5: Empower people with TB and communities Giuliano GARGIONI TB/HIV and Multidrug resistance Unit, Stop TB Department, WHO

Issues Terminology Terminology Effectiveness and cost-effectiveness have been studied Effectiveness and cost-effectiveness have been studied How to proceed in promoting empowerment of people with TB and communities How to proceed in promoting empowerment of people with TB and communities Explore motivation and sustainability Explore motivation and sustainability

Where can we learn lessons from? WHO and partners' research and publications WHO and partners' research and publications Literature review: current debate on community empowerment Literature review: current debate on community empowerment Global review in 7 countries, indicated by Regional Advisers Global review in 7 countries, indicated by Regional Advisers  Describe the interaction of health system and civil society  Explore motivation using qualitative methods  Country narratives and discussion

Consensus Meeting of the Task Force - Objectives Present results Present results Agree on some fundamental terminology Agree on some fundamental terminology Take stock of lessons learnt Take stock of lessons learnt Agree on draft guidelines on Promotion of CTBC initiatives Agree on draft guidelines on Promotion of CTBC initiatives

Process Propose membership Propose membership Web-based forum on a concept paper Web-based forum on a concept paper Inclusion of comments Inclusion of comments Presentations and discussions at TF meeting Presentations and discussions at TF meeting Preparation of draft recommendations Preparation of draft recommendations Briefing to the ACSM Subgroup at country level Briefing to the ACSM Subgroup at country level Further work with TF members to finalize Recommendations/Guidelines Further work with TF members to finalize Recommendations/Guidelines Publication and wide dissemination Publication and wide dissemination

Draft Recommendations Proposed structure Target audience: NTPs and partners (people affected by TB, CSOs, communities) Target audience: NTPs and partners (people affected by TB, CSOs, communities) Structure: Structure:  Overarching principles  Identification of key elements  Principles  Actions, with clear recommendations to the relevant stakeholder(s)

Overarching principles Social justice Social justice Subsidiarity Subsidiarity Individual Responsibility Individual Responsibility Solidarity Solidarity Sustainability Sustainability Partnerships and involvement of patients, local community, and civil society Partnerships and involvement of patients, local community, and civil society Empowerment stigma and discrimination self-esteem specific recommendations for each key partner local ownership no one-size-fits-all in line with MDGs

1 - Policy Guidance: principles Develop or revise NTP policy to include Component Five of Stop TB strategy. Guiding principles create an enabling institutional and policy framework. Empowerment cannot remain a vague commitment. Guiding principles create an enabling institutional and policy framework. Empowerment cannot remain a vague commitment. Adapting general policy recommendation for implementation into the local context, building on local experience and expertise. Adapting general policy recommendation for implementation into the local context, building on local experience and expertise. No “one size fits all” approach; approaches for urban vs rural areas, vulnerable groups No “one size fits all” approach; approaches for urban vs rural areas, vulnerable groups If the community is seen as a partner, this must influence the way interventions are planned, designed and implemented (importance of stating principles of a right-based approach). If the community is seen as a partner, this must influence the way interventions are planned, designed and implemented (importance of stating principles of a right-based approach). National policy should define HOW communities can be empowered. National policy should define HOW communities can be empowered. and HOW empowered communities can contribute to promote health, improve case detection and treatment adherence, combat stigma and discrimination, mobilize political commitment and resources for TB. and HOW empowered communities can contribute to promote health, improve case detection and treatment adherence, combat stigma and discrimination, mobilize political commitment and resources for TB.

1 – Policy Guidance: actions Establish a national-level multi-sectoral core working group, or "Vision team", to work on policy guidance. Establish a national-level multi-sectoral core working group, or "Vision team", to work on policy guidance. Conduct situation analysis to identify gaps, needs and opportunities. Conduct situation analysis to identify gaps, needs and opportunities. Define roles and responsibilities for each of the stakeholders. Define roles and responsibilities for each of the stakeholders. Develop model adapted to specific (local) context. Develop model adapted to specific (local) context. Implement in demonstration areas and learn lessons followed by (rapid) phased implementation (ensuring in field supervision) Implement in demonstration areas and learn lessons followed by (rapid) phased implementation (ensuring in field supervision)

2 - ACSM: principles Prepare strategy and operational plan for component 5 with specific behavioural objectives and targets. Advocacy to build and maintain political commitment, including commitment to mobilize resources, and obtain support at community level as well as at the political/administrative level. Advocacy to build and maintain political commitment, including commitment to mobilize resources, and obtain support at community level as well as at the political/administrative level. Address in particular the challenge of securing funds for PHC activities at community level, to facilitate the work of public health staff and/or CHWs. Address in particular the challenge of securing funds for PHC activities at community level, to facilitate the work of public health staff and/or CHWs. Building on existing development and social initiatives. Building on existing development and social initiatives. Community partnership: to participate in design, planning and implementation from the earliest stages. Community partnership: to participate in design, planning and implementation from the earliest stages.

2 - ACSM: actions Presentation to national/local political and administrative authorities: TB burden, analysis of local situation, opportunities posed by community empowerment. Discuss funding. Presentation to national/local political and administrative authorities: TB burden, analysis of local situation, opportunities posed by community empowerment. Discuss funding. Communication: preparation of simple and clear messages to inform and create awareness among the general public about TB and available services and how people can be empowered to take action. Communication: preparation of simple and clear messages to inform and create awareness among the general public about TB and available services and how people can be empowered to take action. Proposal of community partnership. Proposal of community partnership. Dialogue about challenges, roles and responsibilities. Dialogue about challenges, roles and responsibilities. Decision about priorities. Decision about priorities. Preparation of "model". Preparation of "model". …. ….

3 - Capacity building Build capacity for Component Five: ACSM and all other areas relevant for model at country-level Principles: "ACSM to fight TB, 10-year framework for action", Patient's Charter, Int'l Standards of Care and the overarching principles mentioned above provide guidance to countries on this essential element. Actions: Training for all stakeholders, guided by task analysis. Training for all stakeholders, guided by task analysis. Develop flowcharts and checklists of activities with sequence of events. Develop flowcharts and checklists of activities with sequence of events. HR crisis: partnership (and partial devolution of responsi- bility for supervision) with NGOs already operating in hard- to-reach areas, or urban settings or other specific situations. Option for formal national partnership. HR crisis: partnership (and partial devolution of responsi- bility for supervision) with NGOs already operating in hard- to-reach areas, or urban settings or other specific situations. Option for formal national partnership.

4 - Development of tools Develop IEC and BCC strategy (including materials and methodologies) for different levels and stakeholders. Develop IEC and BCC strategy (including materials and methodologies) for different levels and stakeholders. …… ……

5 - Specific challenges Approaches to component 5 need to take into account special challenges (e.g. TB/HIV, MDRTB, indigenous populations, prisoners, etc.) Principles: Greater community involvement in TB programmes, building on the experience and collaborating with HIV/AIDS civil society initiatives, can provide a strong basis for advocacy for improved TB/HIV services. Greater community involvement in TB programmes, building on the experience and collaborating with HIV/AIDS civil society initiatives, can provide a strong basis for advocacy for improved TB/HIV services. NGOs working in the field of HIV/AIDS should as well coordinate their activities with community-based TB initiatives. NGOs working in the field of HIV/AIDS should as well coordinate their activities with community-based TB initiatives. Actions: Ensure coordination between TB and HIV programmes as well as with and between CSO's and other relevant stakeholders with respect to component 5. Ensure coordination between TB and HIV programmes as well as with and between CSO's and other relevant stakeholders with respect to component 5.

6 - Ensuring quality Ensuring quality of broad range of services provided at community level. Principles: Ensure services are patient-oriented and tailored to local culture. Ensure services are patient-oriented and tailored to local culture. Ensure adequate link between the level of health services interfacing with community directly, and ensure resources to enable them to do their job. Ensure adequate link between the level of health services interfacing with community directly, and ensure resources to enable them to do their job. Actions: Ensure community is TB literate, e.g. knowledge of nature of TB (curable, infectious, etc.), symptoms, availability of free treatment, etc Ensure community is TB literate, e.g. knowledge of nature of TB (curable, infectious, etc.), symptoms, availability of free treatment, etc

7 - Establishing M & E and supervision plan Principles: Clearly define activities. Clearly define activities. Ensure all relevant stakeholders are involved in identifying indicators of community empowerment and baselines for targets, in line with overarching objectives. Ensure all relevant stakeholders are involved in identifying indicators of community empowerment and baselines for targets, in line with overarching objectives. Collect essential disaggregated data by variables such as age, gender etc. Collect essential disaggregated data by variables such as age, gender etc. Ensure community capacity to assess their own contribution. Ensure community capacity to assess their own contribution. Actions: Revise R&R system to reflect M&E of E5 Revise R&R system to reflect M&E of E5 …… ……

8 - Budgeting and Financing Principles: Clearly define activities. Clearly define activities. Identify comprehensive list of expenditures relevant to involvement of different stakeholders (e.g. training, transportation, barriers for patients such as hunger, etc) including hidden costs. Identify comprehensive list of expenditures relevant to involvement of different stakeholders (e.g. training, transportation, barriers for patients such as hunger, etc) including hidden costs. Carefully address issues around remuneration or enablers or incentives of (voluntary) work of involved stakeholders considering functions and time spent. Carefully address issues around remuneration or enablers or incentives of (voluntary) work of involved stakeholders considering functions and time spent. Discuss what relevant stakeholders/partners can provide and raise development issue (communities have resources not directed at health, often seen as exclusive MoH responsibility) Discuss what relevant stakeholders/partners can provide and raise development issue (communities have resources not directed at health, often seen as exclusive MoH responsibility)

9 - Operational Research Additional operations research is needed to answer general or context-specific questions. Emphasize (ex-)patient contribution, issues around gender. Emphasize (ex-)patient contribution, issues around gender. Document good practices. Document good practices. Link operational research with M&E. Link operational research with M&E. Identify innovative schemes Identify innovative schemes