Community-Led Monitoring: When Community Data Drives Implementation Strategies

Baptiste, Solange; Manouan, Alain; Garcia, Pedro; Etya'ale, Helen; Swan, Tracy; Jallow, Wame

doi:10.1007/s11904-020-00521-2

Cited by 33 publications

(40 citation statements)

References 20 publications

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“…Consistent with the limited body of evidence pointing to the importance of community-led advocacy for addressing structural barriers to HIV-related services [ 19 , 57 ], we observed meaningful gains in creating a more enabling environment for accessing HIV care in each participating country. Specifically, we identified nearly 100 changes, big and small, to which advocacy made a positive contribution.…”

Section: Discussionsupporting

confidence: 85%

“…Each of the tactics that partnering organizations deployed were associated with positive outcomes, although the types of outcomes commonly associated with each tactic differed. As others have observed [ 57 ], community monitoring tactics played a central role in fostering environments of accountability and encouraging greater awareness among people who hold positions of power on the impact of their action (or inaction) on access to HIV care for gay and bisexual men and transgender women. Variations on mystery client documentation and community sensitization tactics, often used together, prompted concrete efforts on the part of health care administrators and workers to work more closely with the community to improve access and to re-examine local institutional policies and practices.…”

Section: Discussionmentioning

confidence: 99%

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Breaking Down Barriers to HIV Care for Gay and Bisexual Men and Transgender Women: The Advocacy and Other Community Tactics (ACT) Project

2021

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Despite the prevailing consensus on the role that stigma and discrimination play in limiting access to HIV prevention technology, discouraging HIV testing, and impeding access to HIV care, studies that focus on structural interventions to address stigma and discrimination for gay, bisexual, and other men who have sex with men and transgender women are surprisingly uncommon. We aimed to identify the outcomes from a coordinated set of community-led advocacy initiatives targeting structural changes that might eliminate barriers to HIV care for gay and bisexual men and transgender women in five African and two Caribbean countries. We conducted a prospective evaluation that included repeated site visits and in-depth semistructured interviews with 112 people with direct knowledge of project activities, accomplishments, failures, and challenges. Using outcome harvesting and qualitative analysis methods, we observed that over the 18-month implementation period, local advocacy efforts contributed to enhanced political will on the part of duty bearers for ensuring equitable access to HIV care, increases in the availability of affirming resources, improved access to existing resources, and changes in normative institutional practices to enable access to HIV care. Evidence on Project ACT points to the vital role community-led advocacy plays in addressing stigma and discrimination as structural barriers to HIV care.

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Section: Discussionsupporting

confidence: 85%

Section: Discussionmentioning

confidence: 99%

Breaking Down Barriers to HIV Care for Gay and Bisexual Men and Transgender Women: The Advocacy and Other Community Tactics (ACT) Project

2021

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“…As illustrated in examples herein and beyond, the work and impact of communities have been demonstrated through lobbying for greater access to quality antiretroviral therapy (ART) [5], delivering services outside facilities [6,7], financing community organizations [6], influencing national and regional policy [6], driving evidence‐based accountability initiatives [6,8], addressing individual and social level HIV‐related stigma [9] and promoting treatment access as a human right [10]. Communities’ advocacy for, design of and implementation of “safer sex” and harm reduction principles and approaches from the beginning of the epidemic have prevented countless new HIV infections.…”

Section: Discussionmentioning

confidence: 99%

The continuing role of communities affected by HIV in sustained engagement in health and rights

Caswell¹,

Dubula

Baptiste

et al. 2021

J Int AIDS Soc

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Introduction The meaningful involvement of persons affected by a disease is a unique aspect of the HIV response that places people living with (PLHIV) and those directly affected by HIV (peers) at the centre of the design, development and implementation of service delivery and research and policy making. The principle of greater involvement of PLHIV (GIPA) has and will increasingly ensure equitable access to services and engagement of marginalized groups in the HIV response, and to health services more broadly. This paper describes the history, current place in the HIV response and potential future role of PLHIV and communities in health responses. Discussion Historically, the role of communities of PLHIV and peers in service delivery, research and drug development, advocacy, social and political accountability, resource mobilization and social and human rights protection is well documented. Their leadership and engagement have contributed directly to improved outcomes in access to HIV treatment, prevention, support and care services around the world. Their continued and expanded role is especially important for the future success of HIV responses in sub‐Saharan Africa, where the HIV burden remains the greatest. The lessons learned from the leadership and involvement of communities of PLHIV and peers in the HIV response hold value beyond HIV responses. The models and approaches they have efficiently and effectively utilized have relevant applications in addressing shortfalls in health systems in the COVID‐19 era, as well as broader, more integrated health challenges as countries move to develop and operationalize universal health coverage (UHC). However, neither HIV nor other health and development targets can be met if their contributions are not adequately recognized, valued and funded. Conclusions The past three decades have demonstrated that communities of PLHIV and their peers are instrumental in sustaining engagement and advocacy for health equity and financing for health and ensuring that the human rights of all people are recognized and upheld. Quality and effective integration of health systems and UHC can be more effectively designed, implemented and sustained with communities of PLHIV and peers at the centre.

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“…Such changes can then be embedded into local systems by their inclusion in work plans, budgets and job descriptions [43]. One of the shortcomings of using legitimate persons and existing structures may be political and elite capture [44][45][46]. Implementers should therefore watch out for this and plan counter strategies for mitigation, these could include leveraging the support of pro accountability actors who may include other civil society groups with a similar interest or more powerful actors through vertical integration [44,45].…”

Section: Discussionmentioning

confidence: 99%

“…Another challenge that stems from the lack of homogeneity in communities is the influence of multiple types of power dynamics for example between frontline service providers and citizens, the educated and those with no education, men and women, those with influence and positions of authority or higher social economic status and those without [23,45].…”

Section: Discussionmentioning

confidence: 99%

Designing for Scale and taking scale to account: lessons from a community score card project in Uganda

Ekirapa-Kiracho

Aanyu

Apolot

et al. 2021

Int J Equity Health

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Background Planning for the implementation of community scorecards (CSC) is an important, though seldom documented process. Makerere University School of Public Health (MakSPH) and Future Health Systems Consortium set out to develop and test a sustainable and scalable CSC model. This paper documents the process of planning and adapting the design of the CSC, incorporating key domains of the scalable model such as embeddedness, legitimacy, feasibility and ownership, challenges encountered in this process and how they were mitigated. Methods The CSC intervention comprised of five rounds of scoring in five sub counties and one town council of Kibuku district. Data was drawn from ten focus group discussions, seven key informant interviews with local and sub national leaders, and one reflection meeting with the project team from MakSPH. More data was abstracted from notes of six quarterly stakeholder meetings and six quarterly project meetings. Data was analyzed using a thematic approach, drawing constructs outlined in the project’s theory of change. Results Embeddedness, legitimacy and ownership were promoted through aligning the model with existing processes and systems as well as the meaningful and strategic involvement of stakeholders and leaders at local and sub national level. The challenges encountered included limited technical capacity of stakeholders facilitating the CSC, poor functionality of existing community engagement platforms, and difficulty in promoting community participation without financial incentives. However, these challenges were mitigated through adjustments to the intervention design based on the feedback received. Conclusion Governments seeking to scale up CSCs and to take scale to account should keenly adapt existing models to the local implementation context with strategic and meaningful involvement of key legitimate local and sub national leaders in decision making during the design and implementation process. However, they should watch out for elite capture and develop mitigating strategies. Social accountability practitioners should document their planning and adaptive design efforts to share good practices and lessons learned. Enhancing local capacity to implement CSCs should be ensured through use of existing local structures and provision of technical support by external or local partners familiar with the skill until the local partners are competent.

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Community-Led Monitoring: When Community Data Drives Implementation Strategies

Cited by 33 publications

References 20 publications

Breaking Down Barriers to HIV Care for Gay and Bisexual Men and Transgender Women: The Advocacy and Other Community Tactics (ACT) Project

Breaking Down Barriers to HIV Care for Gay and Bisexual Men and Transgender Women: The Advocacy and Other Community Tactics (ACT) Project

The continuing role of communities affected by HIV in sustained engagement in health and rights

Designing for Scale and taking scale to account: lessons from a community score card project in Uganda

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