Community engagement is often not appreciated enough in clinical trials despite being intrinsic to the ethical implementation and outcomes of the trials. Community engagement activities are often conducted for instrumental reasons to meet recruitment targets and to strengthen the quality and the scientific rigor of the trials. Consequently, there are few examples of genuine community engagement in TB trials that seek to empower communities and participants, minimize exploitation of research participants and increase the benefits that participants derive from trials.

Supporting Community Engagement to Promote Tuberculosis Research Ethics and Science (SCEPTRES) is a community engagement qualitative three-year (2021-2023) career fellowship study. The study seeks to demonstrate the critical role of community engagement in promoting understanding of and participation in Tuberculosis (TB) clinical trials using a pragmatic and ethical approach, leveraging two EDCTP-funded TB trials implemented by Zambart in Zambia. These are Tuberculosis Reduction through Expanded Anti-Retroviral Treatment and Screening (TREATS), and the Scalable Active Case Finding Intervention for TB (XACT-3) trials.  

A SCEPTRE is a decorated stick, (called a ‘nkoto’, or ‘ndodo’ in Zambia) usually carried by a Queen, King or Chief as a symbol of authority. As the name implies, this study is about giving power to the community to meaningfully participate in the research process by performing roles traditionally done by researchers.

The study, which is being carried out in two communities in Lusaka, is using innovative co-production approaches to data collection and analysis. Some community members have been trained as Community Based Participatory Ethnographic Researchers (CBPERs). The CBPERs were identified using a selection criteria co-produced with community representatives including Community Advisory Group (CAB) members. Adverts were placed at the local health facilities and community spaces as advised by the community representatives. A total of 366 applications were received, and 31 were shortlisted for interviews. The interviewing panel consisted of two researchers and two community representative. Thirteen applicants were selected to undergo training in principles of social science, qualitative research methods, ethics, and basic computer skills. They have been continuously assessed during study implementation for them to meaningfully participate in data collection, data analysis, report and manuscript writing and dissemination of the research findings.

The study has two main objectives:

  1. To use experience of community engagement in the two TB trials to examine community understanding and experience of the trial process, community participation in the trial process, and how knowledge gained during TB research has a continuing and positive impact on the way TB is managed in the community.
  2. To develop and adapt tools that show the important role of community engagement in promoting good research practice, ethics and TB science literacy at community level. The tools to be developed include training and dissemination material for TB trial results, TB lexicon for current technologies and approaches, ethical case studies, and a review and synthesis of aspects of the Good Participatory Practice (GPP) guidelines for TB. These tools will also provide insight into the ethics of community engagement in TB trials.

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