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Structured Abstract

Document Title:	A Multi-Country Study of the Involvement of People Living with HIV / AIDS (PLWHA) in the Country Coordinating Mechanisms (CCM). October 2003
Institution:	The Global Network of People Living with HIV / AIDS (GNP +)
Authors:	Andrew Doupe, supervisor : Stuart Flavell
Study commissioned by:	The Global Network of People Living with HIV / AIDS (GNP +)
Objectives:	to capture the relationship between CCMs and PLWHA, with a focus on the involvement of PLWHA in the CCMs to provide information to assist CCMs, and ultimately the GFATM, to function more efficiently, effectively and transparently, so that the quality of life of those affected by AIDS, TB or malaria is improved.
Methods:	Synthesis of 74 completed questionnaires received from 13 countries - Bolivia, El Salvador, Cameroon, Chile, Honduras, Haiti, India, Malawi, Moldova, Nepal, Nigeria, Peru and Ukraine. Respondents: Chair of the CCM, CCM coordinator, ministry or government official, the PR, PLWHA or NGOs (on the CCM or not). Interviewers: people living with HIV / AIDS from the recipient country. Except for Bolivia and El Salvador, surveys were conducted between 15 August and 5 September 2003.
Results:	The main survey findings are presented and organised according to four main issues (see Summary of findings): CCM representation Ownership, accountability, monitoring and evaluation Decision-making processes within the CCM Communication Qualitative information is also gathered on the following issues (see Summary of findings in Annex): Meaningful participation PLWHA Involvement Capacity building and skills building How CCM can foster more effective PLWHA participation CCMs in other countries-sharing lessons learned CCM support for PLWHA participation in meetings Training for government about CCMs Training for CCM members working with PLWHA Orientation sessions for new CCM members Support needed by CCM members from the GF in order to do their jobs more effectively Plans for involving the CCM including PLWHA in proposal implementation CCM links See Annex 1 for a GFATM Summary of Findings

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Summary

Annex 1

SUMMARY OF FINDINGS

(Prepared by GFATM, as no author's summary available.)

1. CCM Representation

Selection Process:

Due to the short time frame for setting up the CCM, many CCM members were simply appointed or nominated.

PLWHA Representation:

All countries, except Moldova, have at least one PLWHA (or living with TB) as a CCM member.

Lengths of Terms

The length of terms which CCM members serve varies form country to country.

Size of CCM

Some countries noted that the size of the CCM affects its efficient functioning.

Meeting Attendance

In some countries, there are members of the CCM who do not regularly attend CCM meetings.

Ministry of Health

There was concern about the relative weight of the MoH in the CCM as well as the role of the Minister of Health, who is in many instances the Chair or the Vice-Chair of the CCM.

CCM Membership

In some countries, the PLWHA community did manage to select and elect their representatives on simple criteria such as technical skills in project handling as well as political and leadership capacity. In these countries, PLWHA both inside and outside the CCM report that members bring the voice and opinion of the organization they represent to their work on the CCM. Criteria used to select PLWHA members on the CCMs include: member of the national PLWHA network, leadership of existing organizations, work experience and commitment, communication and advocay skills, specialist in the particular area and the geographical location.

Lack of Technical Capacity

There were complaints about CCM members who have no or little technical knowledge of the three diseases.

Lack of Geographical Representation

In some countries, geographical representation was not balanced.

Other sectors

In some countries, organizations who play a significant role in their society vis-à-vis the three diseases are not represented in the CCM.

Marginalized Communities

The Nepalese CCM Secretary stated that the most affected groups such as men who have sex with men, sex workers and injecting drug users are generally not represented and should be.

Effect of GFATM

Even though many people lack information on the CCM, a large number of respondents answered that the CCM is the kind of forum where all stakeholders can be involved.

2. Ownership, Accountability, Monitoring and Evaluation

Ownership, Accountability

There appears to be some confusion as to who is accountable for the CCM and who is accountable for the GF process in-country. The PR is legally responsible, though the CCM is also responsible for the monitoring of the functioning of the GF in country. In addition, according to the GF guidelines, the CCM is the decision-making structure. However, the lack of legal status is a source of concern. A lack of communication is a primary cause of misinformation as to whom recipients are accountable. Concerns in the CCM process over ownership and accountability in country have increased with the creation of the PR, who is both responsible for the funds and legally accountable to the GF.

Monitoring and Evaluation

As regards a monitoring and evaluation plan for the CCM process, countries are in various stages of evolution.

3. Decision-Making Processes within the CCM

Decision-Making

In general, the decision-making process for the CCM is either by consensus or by voting. In Nepal and Ukraine the Chair is taking decisions without these being referred to the CCM.

Language Issues

There could be conflicts between the use of local languages and English.

Access to CCM Meetings

In most of the countries involved in this study, CCM meetings are open to non-members.

Transparency and Accountability

One country has moved the CCM meetings from the Ministry of Health to a hotel.

Executive Committee

The formation of such a Committee varies across the countries.

Sub-Committes

Some countries have set up one or more sub-committees, which include financial, procurement, proposal development, monitoring and evaluation, as well as committees working on each of the three diseases.

CCM Secretariat

Of the 13 countries, only two have appointed a Secretary to the CCM.

4. Communication

Communications within the CCM

All countries indicated the strong need for better communication. There is a general lack of information on the vision, goals and objectives as well as the operation of the CCM and GFATM. Almost all CCMs are keeping minutes of meetings which are circulated to CCM members.

Communications outside the CCM

A few countrie reported a lack of communication to those outside of the CCM. Only two countries have CCM websites.

5. Meaningful Participation

In order to take a leading role in the CCM structures and increase their participation, PLWHA should earn a reputation for being professional.

6. PLWHA Involvement

In 10 countries, PLWHA have been involved in proposal writing, in 4 countries in selecting the sub-recipients for grants, and in the countries where an M&E process exists, they have been involved. Qualitative information is also gathered regarding the contribution of PLWHA to the CCM and the main obstacles encountered (lack of professional skills, resistance to take into account opinions of PLWHA, lack of clarity over their role, …).

7. Capacity Building and Skills Building

The respondents indicated an absolute need for more systematic training and capacity building (programmatic and evaluation design knowledge, communication and budgeting skills). However, in some countries, the educational levels of PLWHA are such that basic reading and writing skills are lacking.

8. CCM Can Foster More Effective PLWHA Participation Through:

Greater involvement in decision making process, recognition from the government, developing sustainability for PLWHA organizations, practical support.

9. CCMs in Other Countries-Sharing Lessons Learned

Ukraine and Moldova requested that information concerning the participation of PLWHA on CCMs in other countries be collected and disseminated.

10. CCM Support for PLWHA Participation in Meetings

PLWHA receive per diems and transport costs only in some of the countries.

11. Training for Government about CCMs

Some respondents believed that governments require training on CCMs. As regards who should carry out training, there was a variety of suggestions, including the GF, the CCM, UNAIDS, NGOs or PLWHA.

12. Training for CCM Members Working with PLWHA

Most of the countries indicated that CCM members require training concerning working with PLWHA.

13. Orientation Sessions for New CCM members

Two countries indicated the need for an orientation session on the three diseases and on the GF.

14. What Kind of Support Do CCM Members Need from the GF in Order to Do Their Jobs More Effectively ?

More clarity on roles and responsibilities of the GF and the CCMs, guidelines, more communications with the GF, information on other CCMs, technical, logistical and financial support.

15. Plans for Involving the CCM Including PLWHA in Proposal Implementation

Increase representation of PLWHA in all activities and decision making.

16. CCM Links

In most of countries, CCMs have links with networks, major AIDS institutions and organizations. CCMs should be given legal and social recognition to improve these links. More communication should be ensured.

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