How We Engage

Why Engage Communities?

The right of people affected by a disease to participate in medical research as more than just trial participants is a core tenet of global health, and a universal human right enshrined in international law. The Global TB CAB proudly builds upon a rich tradition of communities fighting to be centered in the local, national, and global response to disease.

In June of 1983, a coalition calling themselves “People with AIDS” famously interrupted a conference to lay out a vision of autonomy and empowerment for people living with HIV now known as the “Denver Principles.” Rejecting the passive objectification implied by labels such as “victims” and “patients,” the Denver Principles demanded that People with AIDS “be involved at every level of decision-making,” “be included in all AIDS forums with equal credibility as other stakeholders, to share their own experiences and knowledge,” and “to full explanations of all medical procedures and risks, to choose or refuse their treatment modalities…and to make informed decisions about their lives.”

AIDS community groups like AIDS Coalition to Unleash Power (ACT UP), Treatment Action Group (TAG, a TB CAB cofounder,) and Treatment Action Campaign (TAC) pushed the Denver Principles forward, shifting the research agenda and access landscape in the process. Ultimately, involving people affected by a disease— such as survivors, community health advocates, clinicians, and civil society— is a prerequisite for conducting research that provides social value and positive impact and ensures that innovations best serve the needs and priorities of affected communities.

The better a given intervention serves the people who need them, the better it is at protecting individual and public health. Researchers, scientists, and product developers who have worked with the TB CAB agree: strong collaboration between stakeholders and the TB CAB strengthened the quality of science. An independent report commissioned by the TB CAB to assess its impact from 2011 through 2021 found that people who have worked with the TB CAB regarded the group as a seasoned technical partner who improved the R&D process: as one researcher put it, “I have been really, really impressed by [the TB CAB’s] singularly well focused and thoughtful impact on protocols we’ve shared with them, both on considerations for changes and also for practical thoughts on how we can operationalize those changes.”

A product developer interviewed for the report also reflected positively on his experience partnering with the TB CAB, emphasizing the role that communities play as a watchdog and champion of eventual product rollout: “I really, really value having someone there, making sure we do the right thing…I think having advocates call us on our shortcomings is important to make progress. A lot of the things we did, and the announcement we made [about a product launch], we probably would not have had it not been for advocates.”

Community engagement improves scientific research in many ways, including:

Community engagement ensures research has social value (without that, it isn’t ethical!)
Community engagement is likely beneficial for recruitment, enrollment, and retention into studies, because people feel they have a stake in the research.
Reciprocal partnerships between communities and researchers build lasting, durable relationships.
Community involvement can inform product development, helping to ensure that new technologies serve the needs and priorities of people affected by a disease.
Science-informed communities are better equipped to advocate for key research before governments and other funders.
Communities that share ownership of research are well positioned to help facilitate uptake of and build demand for new interventions and technologies, as well as address hesitancy and misinformation among potential end users.

Community engagement is a vital component of the fight to end TB.

The TB CAB acts in an advisory capacity to product developers and institutions conducting clinical trials of new TB drugs, drug regimens, diagnostics, and vaccines. We provide input across the research continuum, from priority setting and clinical trials protocol development to policy translation and uptake of innovation.

Some tools and tactics used by the TB CAB to engage and advance advocacy priorities along the research continuum include:

Hosting regular and issue-specific meetings with TB research and product sponsors
Conducting clinical trial protocol reviews
Facilitating results dissemination and discussions among community and civil society organizations and stakeholders
Engagement with regulatory authorities
Engagement with the World Health Organization (WHO), governments, donors, and other stakeholders responsible for translating science into policy and programs
Leading and contributing to advocacy campaigns to support uptake of and access to evidence-based innovations and interventions

To learn more and/or to engage with the TB CAB, please get in touch!