H3Africa Community Engagement Working Group (H3Africa CEWG)

1. Introduction


The H3Africa Consortium has identified community engagement (CE) as one of the key issues that need to be addressed to support the successful implementation of genomic studies in Africa. An initial project was commissioned in 2014 to review the literature and to map CE activities across the H3A consortium [1, 2]. This was followed by a CE workshop in Zambia on 8th May 2015. Participants of the workshop included investigators involved in community engagement activities in the H3A projects as well as facilitators with extensive experiences and expertise in community engagement in Africa. One of the main conclusions of this workshop was the need to establish a platform to encourage H3Africa research projects to learn and share best practices of community engagement strategies and to work towards identifying effective CE models that can support genomic studies on the continent [3]. Given global interests in the role of CE in genomic studies and biobanking research, the plan was not to limit these discussions to just H3Africa but to include other CE experts in Africa to enhance opportunities for cross-learning. The H3Africa Community Engagement Working Group (CEWG) was officially established in September 2015 to 1) support the H3A projects with their CE activities, 2) provide opportunities for cross-learning across the H3A consortium, 3) evaluate ongoing CE strategies to determine their effectiveness and 4) develop key recommendations to inform community engagement activities in future genomic studies and biobanks.

2. Membership


2.1 Composition

  • Membership is drawn from interested members of the Ethics and Regulatory Issues working group, CE focal persons of H3A projects and H3A ELSI projects. The principal investigators of each H3A project are responsible for nominating a member of their team to represent them on the WG.

2.2. Non-H3A members

  • To encourage opportunities for cross-learning, the CEWG has also extended membership invitations to non-H3A CE experts in Africa such as the Global Health Bioethics Network (GHBN) and the Global Forum on Bioethics in Research (GFBR). These external members are people who are not directly working with an H3A project or research institution affiliated with the H3A consortium. Such external (non-H3Africa) members can join freely in all conversations of the Working Group and should particularly be invited to share their views or experiences on topics of their expertise. They can also take credit for any significant contributions they make to the working group (i.e. authorship in manuscripts and reports).

3. Chair of the working group


The working group shall appoint a member to chair the group for a period of two-years. (Tenure for the current Chair is from September 2015 to September 2017). S/he will be supported by a Vice-Chair who will be nominated by the working group. The main responsibilities of the Chair will include the following:

  • Provide technical and administrative leadership
  • Coordinate the activities of the working group (meetings, manuscripts etc)
  • Serve as a liaison between the WG and the H3Africa projects and Steering Committee
  • Facilitate in training workshops etc
  • Update the WG on emerging issues related to community engagement etc

4. Meetings


The CEWG will hold teleconferences once a month to discuss progress across the H3A projects, share CE experiences, discuss challenges in the field and review the group’s work plan. Face to face meetings will also be held during the bi-annual H3A consortium meetings.

 

5. Work plan for June 2015-June 2017


The CEWG will focus specifically on community engagement in the context of genomic studies and biobanking in Africa. Current H3Africa genomics studies include work on non-communicable diseases like diabetes, stroke, rheumatic heart disease and schizophrenia. CE is targeted at the groups and communities directly involved in these H3A research projects. Issues related to wider public engagement and stakeholder engagement strategies around genomic studies will also form part of the working group’s discussions. The CEWG will work closely with the H3A Ethics and Regulatory issues and other relevant working groups to share experiences and encourage co-learning.

 

Expected outputs


  1. Improved understanding of genomic studies across the research sites of the H3A consortium
  2. Documentation of evidence-based examples of different CE strategies and the challenges and strengths in each approach (through the use of empirical methods)
  3. Shared H3A CE experiences with the global community through international conferences
  4. Articles on H3A CE experiences and biobanking research to be published in peer-review journals
  5. An edited ‘book’ of narratives on H3Africa CE activities
  6. Online training modules/webinars in collaboration with the H3Africa CC and other working groups?

This group became official September 2015.

Members
Meeting Reports
Documentation