Community Engagement &
Involvement

We are highly committed to ensuring that the voice of patient groups and community activists is integrated into all aspects of our work.

Community Engagement &
Involvement

We are highly committed to ensuring that the voice of patient groups and community activists is integrated into all aspects of our work.

Project Overview

We are highly committed to ensuring that the voice of patient groups and community activists is integrated into all aspects of our work, from conception to dissemination. To facilitate this, we have formed the following groups:

The IMPRINT Community Advisory Board (CAB) is composed of 2 representatives for each of the 7 countries and is led by Mr Kennedy Mupeli (Chair), AVAC advocacy fellow, co-founder of the Botswana Treatment Literacy , Coalition, and a grassroots activist with extensive experience coordinating and implementing campaigns across Southern Africa;

The Expert Patient Group (EPG), Helen Joseph Hospital, Johannesburg, South Africa brings together 12 expert patients to deepen community engagement around cryptococcal disease, explore patient experiences, and inform health education materials.

The IMPRINT Community Engagement Committee (ICEC) of KwaZulu-Natal, Durban, South Africa, brings together community members and health professionals to develop strategies to enhance community awareness of cryptococcal infection and advanced HIV disease.

People who have survived antimicrobial-resistant infections and their caregivers (AMR survivors)

People Living with HIV

1. IMPRINT Community Advisory Board
  • Co-produced educational resources: posters, leaflets, and videos in several languages to promote lumbar puncture uptake.
  • Developed advocacy plans with support using logical frameworks.
  • Convened separate local workshops for CAB members and local partners in the Democratic Republic of Congo (DRC), Mozambique and Guinea: DRC (5 June 2025), Mozambique (8 June 2025), and Guinea (14 August 2025).
  • Held a 3-day in-person training and strategic workshop in South Africa in October 2025, supported by a CADA grant linked to NIHR Global Health Research Professorship (NIHR303140).

The IMPRINT CAB has strengthened equitable partnerships through inclusive project design, regional representation, and shared decision-making. CAB members from Botswana, Malawi, Mozambique, the DRC, Guinea, South Africa, and Vietnam have taken active roles in reviewing protocols, shaping patient-facing materials, and co-leading education efforts. The CAB has built collaborative relationships with MSF, the Drugs for Neglected Diseases initiative (DNDi), and national civil society networks. These partnerships have enabled the rollout of CM materials, stakeholder workshops, and regional advocacy planning. To influence policy and practice, CAB members have liaised with Ministries of Health and facility-level practitioners to encourage integration of CM materials into routine HIV services. In Botswana, for example, this led to peer educators distributing educational tools in public clinics. Advocacy has focused on expanding community capacity for fungal disease literacy and advocating for greater inclusion of patient voices in clinical research governance and ethics processes. An important impact has been the visible increase in confidence and technical contributions by CAB members during protocol reviews and stakeholder dialogues. Members now actively shape community-facing materials and play a role in advocating for implementation within national programmes, particularly in Botswana, Mozambique, and Guinea. A draft advocacy training module and a simplified fungal disease literacy toolkit are now being refined for broader dissemination across the network.

The IMPRINT CAB will review trial documents, including protocols, participant information sheets, informed consent forms and data collection tools before they are submitted for approval. We believe this will be of particular value when developing interview schedules for our qualitative research. One key activity of the CAB will be to contribute to the strategies/tools to increase patient health literacy around HIV-associated fungal infections. By combining our qualitative research data from patients with contributions from the CAB we will be able to effectively deliver impactful messages. The CAB will also provide input into our monitoring and evaluation framework, being presented with regular updates and invited to refine our approach. Finally, they will co-develop and approve the dissemination plan and materials.

IMPRINT Community Advisory Board workshop in Johannesburg, October 2025

2. Community groups

To broaden the impact of our clinical research on advanced HIV disease (defined as CD4 count <200 cells/μL) and related infections, two community groups were formed in 2024 and 2025. The Durban-based IMPRINT Community Engagement Committee (CEC) and the Johannesburg-based Expert Patient Group (EPG) consist of individuals with lived experience of cryptococcal disease. Both groups meet regularly to share personal stories, gain knowledge and skills in healthcare advocacy, and create educational materials about cryptococcal disease and advanced HIV disease to share with their local communities. Both groups participated in the IMPRINT CAB (Community Advisory Board) workshop held in Johannesburg in October 2025. The workshop brought together community members from across Africa to share experiences and brainstorm ways to improve awareness and health services to prevent, diagnose and treat cryptococcal disease in their countries. Rooted in capacity-building, peer-mentorship and shared leadership, these initiatives enable community-driven engagement that strengthens public health literacy and research relevance within local settings.

Durban Community Engagement Committee Celebrating Heritage Day in 2025

Durban Community Engagement Committee Members and Facilitators

Durban Community Engagement Committee Meeting

Community Health Worker Education by the Durban Community Engagement Committee

Members of the Johannesburg Expert Patient Group during a meeting to co-create a video to raise awareness of the importance of early detection and treatment of HIV-related cryptococcal disease in South Africa

People who have survived antimicrobial-resistant infections and their caregivers (AMR survivors)

The new COMBAT Candida Community Advisory Board (CAB) is chaired by Vanessa Carter, AMR patient survivor, chairperson of the WHO Task Force of AMR Survivors and director of The AMR Narrative.

CEI Outputs

Team Members

  • Mr Kennedy Mupeli (BHP)
  • Dr David Lawrence (LSHTM)
  • Ms Sonia Sezille (LSHTM)
  • Dr Johnny Falconer (WHC)
  • Dr. Emily Prendergast (Wits Health Consortium)
  • Ms. Tshiamo Mmotsa (Wits Health Consortium)

The below team members form the EFFECT clinical trial team at the Victoria Mxenge Hospital site:

  • Dr Lia Edkins
  • Ms Phume Ngcobo
  • Sr Ntwenhle Sithole
  • Ms Vanessa Carter (The AMR Narrative)