Empowering Patients and Communities Report from the TaskForce on Community Involvement in TB Care and Prevention Paris, 31 October 2006

Background  New Stop TB strategy launched March  Mandate given during 1 st ACSM Subgroup at country-level meeting last year; joint effort of WHO and Partnership.  Representation of relevant constituencies:  Patients, community representatives from grass root level, CSOs, NGOs, NTPs, other WHO departments involved in similar work.

Objectives  To reach consensus on the terminology used to describe initiatives aimed at establishing partnership with communities.  Present results of the review of community involvement in TB control and discuss emerging issues.  To build consensus on draft guidelines on promotion of community involvement in TB control.

Methodology  A series of country reviews conducted (Bangladesh, Indonesia, Kenya, Malawi, Mexico, Philippines, Uganda)  Literature reviews:  patient empowerment in TB control,  community involvement in TB control.  Above summarized and discussed in concept paper disseminated to all Taskforce members before meeting.  Consensus building on recommendations a joint effort by all taskforce members.

Process  Milan meeting: reaching consensus on broad recommendations.  In order to speed up the process, forming a writing committee. Workshop aimed at finalizing 1 st draft of final document November  E.mail-based finalization of document (task force).  Endorsement by ACSM Subgroup at country-level, and STAG Subgroup.

Final document: main areas of focus  Target audience: NTPs and Partners (e.g. Civil Society, Patients, Local community etc.) engaged in TB care and prevention  Overarching principles (with definitions): - subsidiarity, sustainability, empowerment, local ownership, - human rights and individual responsibility, social justice, solidarity, stigma, justice, solidarity, stigma, -partnerships with patients, local community, and civil society at different levels, no one-size-fits-all, in line with MDGs.

Final document: main areas of focus  Policy guidance for NTPs:  Developing or revising NTP policy to include component 5 of Stop TB strategy (actions, principles)  Advocacy, Communication and Social Mobilization (ACSM)  Preparing strategy and operational plan for component 5 with specific behavioral objectives and targets (actions, principles)  Building capacity for component 5 and all other areas relevant for quality TB control (actions, principles)  Developing IEC and BCC strategy, methodologies and materials for different levels and stakeholders  Approaches to component 5 need to take into account special challenges (eg. TB/HIV, MDR TB, indigenous populations, prisoners, etc.)

Final document: main areas of focus  Ensuring quality of service delivery  Ensuring quality of broad range of services provided at community level (actions, principles)  Establishing M&E/supervision  Establishing monitoring, evaluation and supervision plan for component 5  Budget/Financing (actions, principles)  Operational Research  Additional operational research is needed to answer general or context-specific questions (actions, principles)

Timeline for finalizing document  Meeting of writing committee to work on preparing 1 st draft of final document – by mid November  Draft circulated for comments (taskforce and ACSM at country-level) – comments by mid December ‘06  Endorsement by ACSM subgroup at country-level – by mid January ‘07  Circulation to STAG subgroup for discussion/endorsement ( ) – by mid January ‘07  STAG endorsement – by end January ‘07  Final editing and publication – by end February ‘07