Community Monitoring Accountability Advocates For PHC

In Uganda, the HIV prevalence has over the recent past shown varying peaks at 6.4% in 2004 according to the Sero-Behavioral Survey of 2004, a slight rise to a 7.3% in 2011 as was shown by the AIDS Indicator Survey and a slight drop to 6.2% within the age group of 15- 49 years according to UPHIA (2016-2017) report. Over these years, the variation in the HIV prevalence was attributed to specific factors and notably, the roll out of the nation-wide care and treatment programs integrated in Anti Retroviral Therapy (ART) and Prevention of Mother to Child Transmission (PMTCT) programs. These have significantly contributed to the reduction in new infections; death rates among those already infected leading to prevalence plateauing at 6%. Similarly, the last two years of 2017 and 2018, have shown more positive gains in the HIV care and treatment programs. Specific changes have included further adoption of Test and Treat policy guidelines, innovations and emphasis on Viral load monitoring, enhanced HIV prevention programs such as elimination of Mother to Child Transmission (eMTCT), safe male circumcision, targeting of key and priority populations, improved HIV Testing Services (HTS), Differentiated Service Delivery (DSD) and innovations such Assisted Partner Notification (APN), quick and more localized testing tools such the oral quick tests and capacity building initiatives. The country’s vision is to reduce HIV infections to Zero by 2020 as per the National HIV and AIDS Strategic Plan (NSP) 2015/16- 2019/2020.

For close to 20 years, one of the outstanding factors documented to have negatively affected HIV decline and progress towards zero infections in Uganda and elsewhere is the HIV related stigma, discrimination and the poor involvement of Key Populations especially LGBTIQ in the National HIV and AIDS Strategic Plan (NSP) 2015/16- 2019/2020.

Our project on the Accountability Advocates Model is in the run up and in response to the commitment made by different stakeholders and Government of “accountability to our citizens” in the implementation of the National HIV and AIDS Strategic Plan in relation to Sustainable Development Goals (SDGs).

When we talk about citizens, we’re mainly talking about young people: the 3.5 billion people on the planet who are under 30 years old. The launch of the SDGs provides a generational opportunity for young people to become leaders in decision making, and to take part in the design, implementation and monitoring of the development framework that will directly affect their lives. At the same time, recognition has spread of the accountability gains that can be unlocked by the growing potential for people to understand, generate and own data. If data is the asset accountability advocates have been waiting for, young people are the agents. There won’t be a data revolution without users; who must be able to access information, which meets their needs rather than the needs of the data providers.

Participatory monitoring and accountability are key components in ensuring tracking progress on commitments such as the GAM, Global HIV Prevention Roadmap, National Strategic Plans  hence enabling the attainment of sustainable development programmes and policies work for everyone, with no one left behind .

Our participatory approach to monitoring and review, ensures a framework where all people- especially LGBTIQ  and other diverse youth -can have ownership of development goals and targets . We believe that if young marginalized people are equipped and empowered with the skills to use, analyse and generate data on key issues that affect their lives, they will take the lead in exercising accountability over their governments.

Our Solutions Goal is to achieve increased accountability for Health, Rights services among LGBTIQ and other gender diverse Youth especially tracking progress on commitments for HIV Prevention Roadmap, National Strategic Plans but also enable other Key Populations  engage  in the planning, monitoring, evaluation of service delivery to enact desired Change Within their own communities.

Community-led monitoring is an approach to assessing the quality of health services (HIV/TB and SRH services). It’s an Intervention that we hope to implement within and by community groups especially from key populations, people living with HIV and other affected groups. It involves use of a structured tool with a set of questions for gathering quantitative and qualitative data and observations about components of HIV/TB services.
The aim is getting input from recipients of these services on quality, accessibility and availability. The data generate is then used by service recipients and other advocates (PLHIV, key populations, CSO, CBOs) to design community actions for change in the status of services delivery.

The Community Score Cards (CSC) involve the beneficiaries or patients engage Health service providers and Health departmental heads at district and national  level, this is a citizen-driven accountability approach, to engage LGBTIQ Youth and other diverse vulnerable youth in the planning, monitoring, and evaluation of service delivery and in enacting desired change within their own communities. This approach will empower LGBTIQ Youth and other diverse marginalized community members to hold programs, policies, and institutions accountable to their unique needs in regards to Health Rights.

It’s an Intervention that we hope to implement within and by community groups especially from key populations, people living with HIV and other affected groups.                

For close to 20 years, one of the outstanding factors documented to have negatively affected HIV decline and progress towards zero infections in Uganda and elsewhere is the HIV related stigma, discrimination and the poor involvement of Key Populations especially LGBTIQ in the National HIV and AIDS Strategic Plan (NSP) 2015/16- 2019/2020. 

The intervention It involves use of a structured tool with a set of questions for gathering quantitative and qualitative data observations about components of HIV/TB, SRH and mental Health services.

AimING at getting input from recipients of these services on quality, accessibility and availability. The data generate is then used by service recipients and other advocates (PLHIV, key populations, CSO, CBOs) to design community actions for change in the status of services delivery

Our Project integrates two key skills in its programming; expertise by lived experience and expertise by training. The organization behind it, Key Populations Uganda, was founded in 2017 by people who have experienced stigma and discrimination while trying to receive services and at times were denied access to Health Care services because of who they are in Wakiso Uganda.

Majority of the highly skilled health Community Monitors Advocates, staff and volunteers that make up the team of Key Populations Uganda are diverse gender non-conforming people with Stigma and discrimination lived experience. This is a clear indication that our team is representative of the population we serve. It also places our team in a unique position in terms of input, ideas, agendas and implementation of its services in relation to the community it serves.

The project is in a better place to understand the needs and support necessary in its implementation as it involves beneficiaries through consultations and putting the beneficiaries at the center.

Many Organizations within the community have conducted both Community score cards and monitoring an approach to assessing the quality of health services but the inadequate resources and the scarce funding to PHC Health services provision monitoring and data collection initiatives is an obstacle which is limiting assessing Health care services and sabotaging the need to fullfill the SDG 3 and ensure primary Health care as a 3 in 1 investment.

The community monitoring Accountability Advocates are responsible for monitoring several healthcare facilities in the community in order to assess the status of Health Care services provided. Using the data collected, Community Monitoring Accountability Advocates engage with primary healthcare facility staff, implementing partners, clinic committees and other key stakeholders in order to advocate for improved Healthcare services delivery and track progress towards this, as they keep a meticulous record of all data collected and community level engagements to ensure a transparency and accountability.

The data generated enables broader positive impact as its then used by service recipients and other advocates (PLHIV, key populations, CSO, CBOs) to design community actions for change
in the status of Health Care services.

The First Year Impact goal: Community Monitoring Accountability identifies

enablers and barriers to improved access and quality Healthcare and
support services

The 5 years  is to develop a framework and an inclusive system to ensure that Community Monitoring  is carried out by a diverse group of CSOs within different communities level and nationwide

Number of Community Monitor Advocates Trained in Community Led Monitoring and tools management.

Number of Health Facilities monitoring using agreed upon facility-based tools.

Number of meeting engagement with target populations including People Living With HIV, people with TB,  Key Populations, youth, Adolescent Girls and Young Women, and men, in order to uncover issues affecting HIV and TB service delivery.

Number of Community Score Cards conducted

Number of meetings conducted to engage partners and stakeholders to strengthen local advocacy and influence changes at health facility level

85% of the Community Monitor Accountability Advocates actively taking up spaces and holding leaders to account on Health Rights un fulfilled pledges in HIV programming and made to account.
80% of the Community Monitor Accountability advocates are being involved in Health Rights programs as Advocates influencing decision making for MSM at district and National Level.
75% of Community members participating in institutional, program, project, or community activities/bodies

With an outcome of a developed framework and an inclusive system that's  ensuring  Community led monitoring down to the community level; and identified enablers and barriers hence improved access to quality of Health Care Services.

The Health centers monitoring using agreed upon facility-based tools will help in improving services delivery at the Health Centers.

The data collected during monitoring will be used at facility level engagement & advocacy hence improved primary Health care.

The engagements or meetings with target populations including People Living With HIV, people with TB,  Key Populations, youth, Adolescent Girls and Young Women, and men, in order to uncover issues affecting HIV and TB  and other Health service delivery will enable improvement in services since the barriers identified will be uncover and solutions put forward in a participatory manner with patients enabling stigma free Health care services.

Hold regular meetings with facility staff, and clinic committees to discuss the quality of service provision at facility level as determined by the data collection exercise;

The Score cards will act as an avenue to Provide feedback to community members on engagement efforts with district and health facilities’ leadership on where improvement has occurred and where its needed hence improved primary Health care.

Engaging partners and stakeholders will lead to strengthened local advocacy and influence changes at health facility level.

Community-led monitoring is an approach to assessing the quality of health services . It involves use of a structured tool with a set of questions for gathering quantitative and qualitative data and observations about components of Health Care services. The aim is getting input from recipients of these services on quality, accessibility and availability. The data generate is then used by service recipients and other advocates (PLHIV, key populations, CSO, CBOs) to design community actions for change in Health Care services.

Our Approach is for the community and by the community putting the patients and beneficiaries at the center in their Health decisions at Health centers in a participatory manner.

community monitors Accountability Advocates (CMAA)will collect the data as they will be responsible for monitoring several healthcare facilities in order to assess the status of Health services provided and share with Healthcare workers in primary care facilities.

CMAA Carry out clinic monitoring using agreed upon facility-based tools reaching Health Centers.

Use data collected for facility level engagement & advocacy

CMAA will also Hold regular meetings with facility staff, and clinic committees to discuss the quality of service provision at facility level as determined by the data collection exercise;

CMAA will Provide feedback to community members on engagement efforts with district and health facilities’ leadership.

CMAA Collect Community individual stories where specific issues arise

They are majorly given money incentives by projects but also look at their capacity enhancement through trainings to sustain their monitoring so as after five year their services can be integrated in the Health facilities systems to ensure proper primary Health Care.

We embrace the power of lived experience and Key Populations relations in all structures and programs which makes it stand out. Ideally, it demonstrates a great breakthrough in challenging pervasive  health stigma. It is user-led going against the widely held misconception about abilities of people with HIV, Mental Health, LGBTIQ and Sex workers health lived experience. Majority of its members; staff and volunteers are diverse people belonging to the Key Populations category. 

We employs a non-discriminatory policy by employing individuals who are diverse with reference to race, ethnicity, religion, gender and disability. This policy also extends to its service provision. 

The initiative also demonstrates intersectionality in our work.