Project Title

Supporting Community Engagement to Promote Tuberculosis Research Ethics and Science (SCEPTRES)

EDCTP Project Call

Career Development Fellowship (CDF)

Project Objectives

1. Use retrospective and on-going experience of community engagement in two EDCTP TB trials (TREATS and XACT-3) to examine community understanding and experience of the trial process, participation in the trial process and enduring influence on the management of TB beyond the trials. 2. Develop tools for engendering the role of community engagement in enduring ethics and TB science at community level

Study Design

qualitative research study

Project Summary

This qualitative fellowship research study will 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 TB trials in Zambia. It will use the trials to look back at community experience of engagement in trials and understanding of TB science, and to look forward to adapt, develop and pilot community engagement tools that promote both ethics and TB scientific literacy. This research is premised on the evidence that community engagement is often undervalued in clinical trials despite being intrinsic to the ethical implementation and outcomes of the clinical trials. Currently, 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. Two TB clinical trials, funded by EDCTP, are being carried out in Zambia. Tuberculosis Reduction through Expanded Anti-Retroviral Treatment and Screening (TREATS) (2017-2022) cluster randomized trial (CRT), and the scalable active case finding intervention for TB (XACT-3) (2020-2023) trial are both evaluating the impact of active case-finding on TB. Using this opportunity, and my role in community engagement design and implementation in both trials, this fellowship research will allow for: reflection on experience and approaches of community engagement to date; the adaptation and development of community engagement tools for TB; and piloting a public engagement intervention, using the resulting tools, to engender the role of community engagement in enduring ethics and TB science at community level. The timeframes of both trials allow for initial retrospective research of TREATS in two communities leading into applying the data findings and adapted and/or developed tools to the implementation of XACT-3 in another community. Human centered and participatory research methods will be used to collect and analyze data, adapt, develop and pilot tools and disseminate research findings. Using a community-based ethnographic participatory research (CBEPR) approach, community members will be selected and trained in a range of methods including Focus Group Discussions (FGDs), storytelling, cognitive interviewing and photovoice. Tools to be adapted/developed are: ethics case-studies, TB literacy and dissemination materials. These will be piloted within a public engagement intervention in one community. Knowledge generated from this research aims to maintain ethical stakeholder relationships in TB trials and enhance enduring community agency and resilience to TB through improving knowledge uptake of TB science at community level.

Host Organisation

Current Organisation

Current Job Title

Biography