Technical assistance unlocks community leadership

This series asks and addresses some key questions around distributed leadership, including: how can we share power and decision-making? How can we support leadership among individuals and organisations? The themes and lessons from this blog series will inform the on-going evolution of the Frontline AIDS partnership and how we co-design new programmes.

Mona Sheikh Mahmud works for Frontline AIDS as a technical assistance consultant. In this blog post she explores how technical assistance unlocks community leadership in the HIV response.

People behind the numbers

“Behind each statistic, there is a person. A person with his or her own story. A person with dreams and hopes, just like you and me”.

I often use these lines in my workshops. I want people to remember that public health practitioners don’t just deal with numbers. We work with human stories.

Earlier this year, I supported the development of a national community-based monitoring system in Ghana. I was working as a Frontline AIDS consultant as part of the Global Fund programme, helping local partners jointly design and implement the system.

Marginalised people who are highly stigmatised often lack the information needed to participate meaningfully in the design of programmes and services that affect their lives. Through community-based monitoring we are mobilising them to take leadership in, and responsibility for, the national HIV, TB and malaria responses in Ghana. By empowering communities to monitor and collect data about the services they use and the issues they face, we are helping to create countless positive personal stories and outcomes.

Building on existing hierarchies and local structures

Marginalised communities often have their own long-established ways of collecting and acting on information. Community-based monitoring simply formalises and builds on these systems, linking them to services provided by the government and non-governmental organisations. An example of this in Ghana, is our work strengthening the role of sex worker leaders, or “Queen Mothers” as they are known.

Localised community systems have cultural nuances which are often absent in programme design. In Ghana, traditional rulers and elders have an influence in community planning and development, such as housing, education, healthcare and water. Older Ghanaian women who have acquired authority in the local sex worker community are referred to as Queen Mothers. These women have significant influence over the lives of sex workers in their neighbourhoods. Queen Mothers are called on to resolve problems within the community, including violence against sex workers and health-related emergencies. This is community monitoring in practice.

In several focus group discussions with sex workers, I asked who they would turn to if they were the victim of violence or abuse. I drew two concentric circles and instructed them to write who they would tell first, in the central circle, and second, in the bigger circle. Neither choice included the police or outside authorities. This underlined for me the need to expand the role of Queen Mothers, so that sex workers could report directly to them. This is important as sexual and gender-based violence puts sex workers at higher risk of negative sexual, emotional and physical health outcomes. It makes it less likely that they will seek or maintain HIV prevention and treatment services.

Queen Mothers recruited to human rights monitoring

Whereas Queen Mothers helped to resolve issues informally before, now they are being trained to do the work more formally, and when necessary to report to the Human Rights Commission and police. A structured community-based monitoring system will add value to this system, by linking key stakeholders like these community elders to appropriate services. At the same time the system will gather information on the frequency of incidents, such as human rights violations.

This is a good example of how technical support can help unlock leadership and shift power to marginalised people. Frontline AIDS provides technical assistance to individuals, organisations and communities around the world, so they can influence how their healthcare is delivered. In 2018, Frontline AIDS provided technical assistance to support the representation of marginalised populations at national level in 25 countries.

Monitoring human rights violations

For the Global Fund, my brief was to ensure that community-based monitoring helped respond to challenges that emerge during implementation of the programme. Monitoring provides an alert system. It can prompt a rapid response to critical issues, such as drugs running out, human rights violations, or incidents of stigma and discrimination. I helped to identify and organise community actors and volunteers to monitor the quality of services and incidents of stigma and discrimination.

To monitor human rights violations, individuals from marginalised groups are identified to take on particular roles. So, for example, Queen Mothers become focal points and gatekeepers for their communities. They work closely with HIV focal points who have been identified in the police department and the Commission on Human Rights and Administrative Justice. The community-based monitoring activities in Ghana will be supervised and supported by the independent Social Accountability Monitoring Committee. The membership of this committee at the national level includes civil society organisations and members of marginalised groups. At the regional level, membership includes regional health departments, Ghana AIDS Commission and traditional leaders. Data about incidents that arise will then be then used to inform advocacy and improve quality in service delivery.

Feeling encouraged

As a technical assistance provider, I am aware of the limitations of providing support and then standing back. The success of a community-based monitoring system very much depends on country ownership, validation and the recognition of civil society actors.

So, I was encouraged when a district health director indicated his support for the system.  “Mona, we don’t just need this system for HIV, TB and malaria,” he said. “We need it for everyone in Ghana who uses health facilities.”

I couldn’t agree more.

Acknowledgement:

The contribution of civil society organisations in the development of community-based monitoring strategies and activities in Ghana were invaluable. My work in Ghana would not have been possible without the support of TB Voice Network, West African Programme to Combat AIDS and STI and Hope for Future Generations. Frontline AIDS and the Global Fund Community Rights and Gender Technical Assistance Programme were instrumental in providing support, guidance and feedback throughout the process.

Other blogs in this series:

The evolution of youth leadership and ever-present challenges

From local projects to global leadership

Marginalised groups unite to hold stakeholders to account