Giving voice to the voiceless: engaging community

Babs Verblackt, CNS Special Correspondent
Community engagement is a critical component in reducing stigma, raising awareness, and facilitating access to services for people living with HIV (PLHIV) and TB. From disease control and reaching health services to decision making and drug development--in every element of combating these diseases affected communities should have their say. Several initiatives around the globe are making efforts to ensure that weak voices are not only getting stronger but are also getting heard.

The theme of the 45th Union World Conference on Lung Health in Barcelona was also on ‘Community Driven Solutions for the next generation’. This approach recognizes the essential role of affected persons and advocates, whose inputs must be integrated into the conception, design and implementation of interventions along with that of other experts.

ENGAGE TB is another lead initiative of the WHO Global Tuberculosis Programme to support implementation and scale-up of integrated community-based TB prevention, diagnosis, treatment and care. The ENGAGE TB principles are aligned with the stop TB strategy and are complementary to existing guidelines for engaging all health care providers (including NGOs) in TB prevention and care as part of a public–private mix.

Healthcare workers at risk
In Swaziland, workers' unions are involved in augmenting TB control efforts in a highly vulnerable group: health care workers. Swaziland has one of the highest burdens of both TB and HIV in the world. "Because of their job, healthcare workers are at increased risk of TB, yet they are not screened routinely for the disease, TB incidence is unknown and the linkage to care for affected health care workers is inadequate," said Samson Haumba, researcher at University Research Co., LLC (URC).

Both TB and HIV are significantly affecting health care workforce capacity, he said. "Directly through death, decreasing performance and absenteeism, and also indirectly because of increasing work load and burn out." With the support of workers' unions a small pilot project was set up for systematic TB screening among health care workers, including sensitization on TB screening and HIV testing.

"The involvement of workers' union is critical in addressing the vulnerability of health care workers," Haumba says. "The project highlighted the severity of the problem and the need to integrate and scale up TB screening. We are expanding the number of health facilities involved and the union is very supportive of this."

Involving NGOs
In South Africa, non governmental organizations (NGOs) were approached to help expand TB services to key populations. In the past five years 75 NGOs got funded through the USAID TB Programme. Their activities varied from initiatives in TB case detection and contact management to TB/HIV awareness in the workplace and communities.

"The number of NGOs integrating TB care into their existing programmes has increased," said Tumi Mbengo of USAID TB Programme South Africa, emphasizing that this was a challenge since most organizations focus on HIV (and not on TB) and home based care. "We continuously had to push for TB programmes. But we learned that the involvement of communities in TB management and control can improve treatment outcomes and adherence drastically. Moreover, the NGOs were able to reach people in hard to reach areas."

Rights and responsibilities
The poor involvement of TB affected communities in the process of decision making at different levels was one of the reasons for Oxana Rucşineanu to set up the Moldova National Association of TB Patients. As a former multi-drug resistant TB (MDR-TB) patient she knows the challenges in community engagement. "Doctors often tell us that patients only know their rights, not their responsibilities. But as a matter of fact many patients know neither," she says. "Personally experiencing TB makes you look at things differently. You see the gaps in the health care system and communication."

Her association advocates, among others, for partnerships between patients, medical staff and authorities to improve TB patients' health and make treatment processes more efficient. "Our demands never change, we want shorter and less toxic forms of treatment and more psychological support. We keep assessing patients' needs and reveal existing problems. We might not always be right, but by communicating these issues we try to find solutions for the problems we face every day."

Toolkits for community engagement
In clinical studies community engagement is equally important. "Without involvement of the community TB research is not possible," says Stephanie Seidel, Programme Manager for Community Engagement at TB Alliance (Global Alliance for TB Drug Development). Through several initiatives, the NGO works to empower communities in the clinical study process. "One of the challenges is to make sure community engagement is sustainable and the broad community is reached."

TB Alliance put together a research literacy toolkit to educate community stakeholders. "This provides training not just on TB disease and research, but also on the need for new TB drugs and the process to develop new drug regimens. So people get a better understanding of the overall situation, clinical studies and their important role in the development process," Seidel said in an interview with Citizen News Service (CNS).

Yet, research is often not the only issue communities need to be educated on. "There is still a lot of stigma on TB and clinical study participation, as well as a fear of experimental drugs. All of these misunderstandings and misconceptions need to be addressed first, before you can even start educating on field studies and drugs development," she said.

Measure impact
Community engagement should be measurable, she underlines. Therefore TB Alliance and several partners recently introduced a Monitoring and Evaluation tool. The tool includes a web-based system to gather and analyze data and quantitative and qualitative methods to document and measure community and stakeholder engagement. "We know community engagement works, but now we can measure the impact of it on the outcomes of clinical research."

The TB community can benefit from the experiences of the HIV community, where community engagement has so far been much stronger. Seidel feels that, "There are many lessons learned around, yet the uptake has been and still is slow. Though in the past years the comfort level with community engagement increased a lot in research and researchers have been sensitized to the demands and needs of communities. That push did come from the HIV community."

With that comfort level in place, increased support and resources should follow to fully integrate community engagement into clinical trials, Seidel argues. "Community engagement is important, ethical and legitimate, but the investment in it varies a lot. It usually depends on dedicated individuals, often working as volunteers. Researchers benefit a lot from community engagement. If all clinical study sponsors would commit to and support it, we could build a much broader group of TB advocates fighting for new tools, whether it be diagnostics, drugs or vaccines."

Whether the focus is on better ways to deliver medications or access health care; create policies to reach under-served populations; or leverage resources; sustainable health solutions for both the present and future generations will only be reached through this full and committed participation of those are in need of these services. They are the best people to provide solutions to the problems that we face in TB and HIV care and control.

Babs Verblackt, Citizen News Service - CNS
2 November 2014
(WHO Global Tuberculosis Programme is supporting onsite CNS Correspondents Team's coverage around community engagement issues related to TB care and control from the 45th Union World Conference on Lung Health in Barcelona, Spain. Email: