Evidence map›Paper›PMID 38988038›Full record

ArticleJournal of the International AIDS Society2024

Defining community-led monitoring and its role in programme-embedded learning: lessons from the Citizen Science Project in Malawi and South Africa.

Krista J Lauer, Melikhaya Soboyisi, Carol Ameera Kassam, Dennis Mseu, Gemma Oberth, Solange L Baptiste

Abstract read
In one paragraph

Article in Journal of the International AIDS Society, 2024. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 5 papers.

0numbers the graph read from it
0cells of the map it votes in
5citing papers in PubMed
–field-weighted citation impact
1 · What the graph read from it

What it found

Each row is one number read from the abstract, on the scale the paper reported it, with its interval. Left of the dashed line favours the treatment, right favours the comparator. Under each row is the sentence it came from. New to these charts? A ten-minute tutorial.

The abstract states no effect estimate the extractor could read, or names no intervention and outcome on the map, so this paper lights no cell and moves no belief. It is still indexed, cited and linked below.

2 · The registry

The trial behind it

Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.

Neither the registry nor the abstract names a trial number. If this is a trial report, that itself is worth knowing.

3 · Its place in the literature

Who cites it

5 citing papers in PubMed.

  1. Article
  2. Preventing HIV in women in Africa.Nature medicine · 2025
    Review
  3. Article
  4. Article
  5. Article
4 · The record

Corrections and comments

PubMed lists nothing against this paper. Absence here is not a guarantee, only a check that was made.

5 · Who and what money

Authors and funding

6 authors.

Krista J LauerInternational Treatment Preparedness Coalition - Global (ITPC), Johannesburg, South Africa.ORCID https://orcid.org/0009-0000-1991-8127
Melikhaya SoboyisiThe Networking HIV and AIDS Community of Southern Africa (NACOSA), Cape Town, South Africa.
Carol Ameera KassamIndependent Consultant, Lilongwe, Malawi.
Dennis MseuMalawi Network of Religious Leaders Living with or Personally Affected by HIV and AIDS (MANERELA+), Lilongwe, Malawi.
Gemma OberthCenter for Social Science Research, University of Cape Town, Cape Town, South Africa.ORCID https://orcid.org/0000-0002-9322-1923
Solange L BaptisteInternational Treatment Preparedness Coalition - Global (ITPC), Johannesburg, South Africa.ORCID https://orcid.org/0000-0002-8409-765X

Funding

Bill and Melinda Gates Foundation
6 · The paper itself

Abstract

introductionProgramme Science (PS) and community-led monitoring (CLM) intersect in unexpected and promising ways. This commentary examines a CLM initiative in Malawi and South Africa to highlight the crucial role of CLM in bolstering the PS framework. By leveraging data sources often overlooked by conventional research and evaluation approaches, CLM emerges as a pivotal element in enhancing programme effectiveness. This paper delineates the fundamental principles of CLM, presents programme outcomes derived from CLM methodologies and contextualizes these findings within the broader framework of PS. DISCUSSION: The Citizen Science Project implements CLM continuously at 33 health facilities: 14 in Malawi (eight in Kasungu District and six in Dedza District), and 19 in South Africa (all in the West Rand District), representing a total catchment area of 989,848 people. Monitoring indicators are developed in an iterative process with community groups. The indicators are unique to each country, but both focus on the uptake of health services (quantitative) and barriers to access (qualitative). Monthly clinic records surveys capture 34 indicators in Malawi and 20 in South Africa and are supplemented by qualitative interviews with care recipients and healthcare workers. Qualitative interviews provide additional granularity and help confirm and explain the more macro trends in service coverage as described in quantitative data. The resulting data analysis reveals key themes that help stakeholders and decision-makers to solve problems collaboratively. Noteworthy outcomes include a substantial increase in multi-month dispensing of antiretroviral therapy (ART) during COVID-19 (from 6% to 31%) with a subsequent recovery surpassing of HIV service benchmarks in Malawi post-pandemic.

conclusionsWhile quantifying direct impact remains challenging due to the project's design, CLM proves to be a robust methodology that generates credible data and produces impactful outcomes. Its potential extends beyond the health sector, empowering community leadership and fostering interventions aligned with community needs. As CLM continues to evolve, its integration into PS promises to improve relevance, quality and impact across diverse disciplines.

Indexed as

Citizen ScienceHIV InfectionsCommunity ParticipationCOVID-19FemaleHumansMalawiMaleProgram EvaluationSouth Africacommunity‐led monitoringCOVID‐19HIVkey populationsparticipatory action researchProgramme Science

Identifiers

PMID38988038
PMCPMC11236895

What OpenQuestion holds

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LicenceCC BY
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Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.