Terms of Reference
We are a group of civil society organizations and global health advocates committed to the principles of Good Participatory Practice: a framework to ensure that relevant stakeholders will be consulted in the research design and implementation in which they are invested—and that both ethical standards and scientific endpoints will benefit by doing so.
We are working to simultaneously stay informed about COVID-19 research, while also facilitating linkages with ongoing and planned research and access programs. This will ensure community input into ongoing research while allowing the focus of the CAAB to evolve based on civil society feedback and research priorities.
We want to build a safe platform for community engagement in health research, ensuring that ongoing and planned trials follow the highest ethical standards while working towards universal access for health tools once developed and approved.
The CAAB mission is twofold: first to strategically engage civil society and community representatives to ensure the ethical, inclusive, efficient, and accelerated advancement of research and development of urgently needed interventions to combat COVID-19; and secondly, to guarantee global access to proven interventions, especially among historically vulnerable and disenfranchised populations, countries, and communities.
Purpose and objectives
- Fully represent the diversity of communities affected by COVID-19, including geographic, social, health, and economic circumstances that place people at higher risk of infection, severe disease, and death.
- Engage with ongoing and planned research ventures to ensure they are held to the highest ethical standards, and that our communities’ perspectives are included in the protocols, enrolment processes, and access & implementation plans.
- Help to reduce cultural barriers and to enable a response to the current pandemic that is driven by science.
- Raise awareness on how COVID-19 is impacting our communities, as well as about the efforts done globally to tackle the pandemic.
- Help to identify and to implement social, economic, and health measures that would minimize the effects of the disease in our communities and countries, placing the affected communities at the centre of the solution.
- Provide researchers’ teams with crucial social and community factors data and feedback to systematically be considered in their protocols, as well as to make them accountable.
Given the scope and speed of COVID research, the CAAB will develop a strategy/work plan to help guide the coming 12 months. This planning work started at the beginning of 2021.
We recognize that the unprecedented nature of the current public health crisis demands innovative thinking regarding the nature of community engagement. Given the breadth of content, diversity of issues, and potential advocacy actions, CAAB work is divided into three parallel workstreams:
- Training and information.
- Access and advocacy/ communication issues.
- Monitoring Research progress (vaccines, treatment, and diagnostics).
The CAAB is a volunteer-based group that wants to ensure the social, racial, gender, age, sex, and country of origin diversity of its members. Currently, we are 125 people from Argentina, Armenia, Australia, Bangladesh, Botswana, Brasil, Canada, Cote d’Ivoire, France, Greece, India, Ireland, Kenya, Malawi, Morocco, Netherlands, Nigeria, South Africa, Spain, Switzerland, Thailand, Uganda, United Kingdom, United States, and Zambia.
English is the lingua franca although some emails will be written also in Spanish. The CAAB and its members are encouraged to translate the shared materials to expand the number of people who can access the relevant information.
Internal organization and communication mechanisms
- The CAAB will have, at least, a monthly call. The call is open to all CAAB members to discuss the action of plan and co-create strategies. These calls will be on the third Thursday of each month, 16 CET. Assistance is not mandatory. The calls will be arranged in a globally friendly schedule to maximize CAAB members’ participation around the world.
- Calls with sponsors and/or researchers as required/ ad hoc. Although it is not mandatory to participate in all of them, interested members are encouraged to do so or to submit questions and proposals in advance to help to improve the research processes.
- The calls with external stakeholders will be facilitated/ moderated each time by a different CAAB member. CAAB members can self-nominate in the following link.
- Our main communication channel will be the mailing list. When a question is not answered within the allotted timeframe, it will be considered as consent. Minutes, call for proposals, agenda/calendar, recorded webinars, and support material will be shared using this channel. However,
- The CAAB website will also host these materials, working as an archive and ensuring transparency and accountability (see below).
- The website will also include a private calendar for CAAB members and a public one with open meetings.
- Workgroups creation. Working subgroups can be organized for certain topics or geographical interests (as the FDA registration process, where US advocates are the main audience) facilitating operational work. These smaller groups will need to pass all relevant information/summaries to the larger group.
- Currently, there are three working groups: Diversity, Access and Communication.
Accountability and transparency
- Organizational meetings will recorded and shared, both via email and in the private section of the CAAB website.
- Supporting materials such as background information, presenters’ slides, webinars’ recordings, reports, etc. will be public and shared via email and uploaded to the CAAB website.
- If/when a CAAB member attends a meeting or engages with other stakeholders representing the group:
- The general group will have to agree with being represented,
- The member will collect CAAB feedback, questions, and comments to present to these stakeholders,
- Meeting minutes or summary will be shared with the rest of the group via email. If confidentiality clauses and non-disclosure agreements allow it, they will also be uploaded to the CAAB website.
Although the CAAB does not have an expiration date, it will remain active as long as its work remains relevant, its members remain active and the need to promote the right to science and health of the COVID-19 affected communities remains.