Integrating tuberculosis research with public health infrastructure: Lessons on community engagement from Orizaba, Mexico

Study setting

The Consorcio conducted its studies in the Orizaba Health Jurisdiction in the centre of the state of Veracruz (see Table 1 and Table 2). The study area covered 618.11 km² with a population of just over 400,000 encompassing five urban centres (Ciudad Mendoza, Nogales, Río Blanco, Orizaba, and Ixtaczoquitlán) and their surrounding rural areas, totaling 12 municipalities¹⁰. At the time of fieldwork (2009), the urban region was better developed than the rural communities, where people were living more marginally. For example, several indicators, such as percentage of households without access to municipal water, percentage of households with earthen floors, or average years of formal schooling were better for urban than for rural areas (6% versus 18%, 8% versus 21%, and 9 years versus 7 years, respectively)¹¹.

The Consorcio initiated a population-based molecular epidemiology study to determine the dynamics of tuberculosis transmission in the Orizaba region. Among other reasons, the study area was selected by the Consorcio because the National Tuberculosis Program had chosen Orizaba as a pilot area to test the feasibility of implementing the DOTS strategy. This provided a promising opportunity to study tuberculosis transmission in the context of an established tuberculosis control program.

Sample and recruitment

Based on their affiliations or interactions with the Consorcio, 17 key informants were purposely sampled and interviewed in their homes, offices, rural clinics, or public health facilities. Informants were either previous research participants of one of the Consorcio’s trials or directly affiliated with the Consorcio (community health workers, physicians, health authorities, or staff members). Potential participants were identified by the host research team (LGG, LFR, SCQ) and contacted to determine their willingness to participate in the study prior to the site visits. To be eligible, potential participants had to have been directly exposed to the activities of the Consorcio, either as a research participant or as a partner. There were no formal exclusion criteria.

Data collection

To explore the various features of the Consorcio’s community engagement process, we used open-ended interviews, focus groups, and field observations. These were carried out between September 2009 and March 2010.

Interviews lasted between 30 to 90 minutes. All interviews, with the exception of one, were conducted in Spanish with an interpreter affiliated with the Consorcio. In addition, RFB is a competent Spanish-speaker. The other interview was conducted in Náhuatl, with the help of two interpreters (Náhuatl-Spanish, Spanish-English). During the interviews, staff members affiliated with the Consorcio were present and often facilitated the discussion. Interviews with trial team members, public health officials, etc., were carried out in the offices of the interviewees. Interviews with trial participants were conducted in the homes of the interviewees.

We also conducted two focus groups with community health workers and the main Consorcio trial management team, and we accompanied community health workers for follow-up visits with trial participants. Each focus group took between 45 and 90 minutes. Over the course of these data collection activities we spent 6 full days visiting participants’ homes, public health authorities, local hospitals and clinics. We also conducted intensive debriefings after each day of interviews, during which we posed supplementary questions and, as a group, began some preliminary conceptualizations of the interview findings and field observations. Interviews and focus groups were not repeated.

Analysis

Audio recordings and hand-written notes were made for each interview. The recordings were then transcribed verbatim and translated by a professional agency (GMR Transcription) and were verified by RFB. Initial coding of interview transcripts was conducted by RFB using the qualitative data software ATLAS.ti version 5.2. Subsequent analysis, interpretation, and re-coding of the data were conducted by RFB and JVL in Toronto, Canada. Through analysis meetings and iterative drafting, key concepts and themes were identified in the data and a “best fit” interpretation was developed. Quotes from various informants have been chosen to best represent the themes explored. The number in brackets following each quote indicates the interview from which the data are drawn; CHW indicates a community health worker, CS indicates a Consorcio staff, PHA indicates a public health agent (e.g., government epidemiologist, physician), PT indicates a participant in the Consorcio’s research activities.

Ethics approval and consent to participate

Written and verbal informed consent was obtained from all participants. The study was approved by the Research Ethics Board of the University of Toronto. It was part of a larger research program that included a series of case studies with similar methods^12–14.

Initial barriers to community engagement

Fragmentation of the healthcare system. When the Consorcio arrived in the Orizaba Health Region, the health sector lacked effective coordination and communication, with fragmented service provision. At the time, a tuberculosis patient might be served by any of four institutions, depending on their insurance status¹. This contributed to a poor reputation among patients. For the Consorcio it quickly became clear that “The first thing we would need to do is create a group and work together” [I12, CS] because “the people in the community commented and kept saying, ‘How can we trust you if you don’t come to an agreement?’” [I12, CS]

Limited tradition of interaction with the health sector. Several of our community informants reported that they had grown accustomed to being ignored by the public health system. In one of the more remote villages of the Health Region, a community health worker explained that prior to the arrival of the Consorcio, her community was:

At the time of our fieldwork, recent moves to decentralise the Mexican health sector¹⁵ appeared to be largely unsuccessful at overcoming these experiences of marginalization, and at encouraging communities to be more proactive in seeking care. Consequently, the initial presumption of the Consorcio leadership that it would be possible for the initiative simply to use the existing community engagement infrastructure of the public health service to reach marginalized communities was quickly dispelled.

Indigenous communities’ distrust of outsiders. Attitudes of distrust in remote communities were most pronounced among indigenous communities. One investigator described how the Consorcio first had to gain the trust of the residents of a small village by going from door to door to discuss respiratory diseases before the research itself could begin. For this to work well, Consorcio workers had to enlist the help of a local resident to act as an intermediary:

In the indigenous populations, language barriers were also an obstacle to community engagement. In particular, some feared that the need to rely on mediators might increase the risk of misunderstandings that could undermine the future success of the Consorcio’s projects.

Fear of TB-related stigma. The Consorcio’s researchers also had to navigate through the ambiguous relationship local communities had with tuberculosis itself. On the one hand, people generally lacked direct, or experiential, knowledge of the disease, which limited their capacity to recognise symptoms. These were frequently downplayed or dismissed:

On the other hand, interviewees were well aware of the contagious nature of tuberculosis and of the stigma attached to it, which further complicated case finding:

Fear of stigma also limited the opportunities for open discussions with patients about TB:

Towards a common purpose: Building a coalition to support tuberculosis research

After selecting the Orizaba Health Region as a research site in the mid-1990s, the Consorcio team began to build a supportive coalition of leaders of local health agencies and organisations to explore how the Consorcio could contribute to improvements in TB-related infrastructure and service-delivery, for example, by providing improved diagnostics and outreach to marginalized populations. The Consorcio then undertook a second phase of coalition building, reaching out to other sectors (including the educational, financial and agricultural sectors) to strengthen the overall buy-in of local communities.

Phase One: Enlisting the support of local health authorities. Tuberculosis was a recognised problem in the Health Region, but local epidemiologists feared that they “did not know the percentage of patients afflicted with tuberculosis in the region” [I13, PHA] and that they did not have the infrastructure to collect and analyze the necessary data. The local standard of care was also seen as sub-optimal:

Poor accessibility and affordability of treatments also undermined control efforts:

The Consorcio was interested in determining whether the DOTS approach recommended by the World Health Organization would be viable locally. This offered an important opportunity to address health authorities’ concerns about inadequate treatment. In addition, other influential scientists were concerned by the “high percentage of patients with drug resistance without any prospect for treatment” [I13, PHA]. For these scientists, there was a clear “problem with public health” [I13, PHA], and the research projects of the Consorcio offered a potential solution. By making the case that “the reasons to conduct the investigations were practical, believable, and that there would be enough resources for the continuation of the program” [I11, CS], the investigators of the Consorcio demonstrated their responsiveness to the agenda of local health authorities.

Second, the resources the Consorcio would bring to the Health Region also proved to be a strong incentive for prospective collaborators. It was clear from the outset that Consorcio trials would require technologies and infrastructure and laboratory capacity that were previously unavailable locally. For example, rapid diagnostic capacity for drug-resistant strains needed to be expanded. The Consorcio investigators assured the health authorities that the new laboratory spaces necessary to complete the trials would be made available to the public health system following the research initiatives.

Third, the prestige of hosting a highly promising research consortium, funded in part by prominent international sponsors, also appeared to play a role in the health authorities’ decision to partner with the Consorcio:

Phase two: Reaching out to other sectors. After securing the support of the major public health stakeholders of the Orizaba Health Region, the Consorcio sought to collaborate with other partners, such as municipal governments, the Orizaba chamber of commerce and regional agricultural associations. The aim of this broader engagement was to promote strong public appreciation of the social and economic significance of TB and help ensure that the lengthy trials that the Consorcio planned to conduct would have broad and deep support locally. Important support came from the education sector. Because the Consorcio conducted studies involving schoolchildren, it was important to have the support of teachers and parent associations. Support was also obtained from the local medical, nursing, and pharmacy schools. The Consorcio offered students opportunities to conduct small clinical studies, to gain experience with epidemiological studies, and to practice laboratory skills. Some of the students who were trained by the Consorcio later joined as staff or interacted with the Consorcio in some other capacity (e.g., after having joined the health system in the study area).

Phase three: Sustaining partnerships. Once the coalition of public health service partners was formed, the Consorcio understood that it would need to work actively to sustain it. The Consorcio delivered on its promise to improve the public health system’s ability to manage the regional tuberculosis epidemic. Laboratory testing times were reduced, in some cases from four weeks to two days. More sensitive diagnostic techniques were introduced, which allowed the detection of cases that would otherwise have gone undiagnosed. The Consorcio’s research protocols also expanded the scope of existing treatment programs, since they included outreach to marginalized communities using community health workers. It was also instrumental in Orizaba’s inclusion in the WHO Green Light Committee Initiative/Mexican Tuberculosis Prevention and Control Program for provision of second line drugs, a move that resulted in important improvements in the treatment of drug resistant TB locally. These tangible benefits played a significant role in fostering trust and credibility in the Consorcio, and in revealing the extent of the tuberculosis epidemic in the region.

Building from the ground up: Nurturing camaraderie with the community health sector

By securing the support of the relevant health authorities and making them champions of the project, the researchers leading the Consorcio gained preliminary access to the social and physical infrastructure of the public health system necessary to conduct their studies. The mobilization of the community health sector made the large-scale research initiatives of the Consorcio possible by effectively increasing its human resource pool. But while the Consorcio initially harnessed the commitment and infrastructure of the community health sector by engaging the health authorities, the relationship between the Consorcio and the de-centralized public health sector was far from top-down. Instead, meaningful engagement of the community health sector was an integral component of the overall engagement strategy of the Consorcio in the Orizaba Health Region.

In particular, the Consorcio leadership quickly understood that community health workers (CHW) could serve as ideal intermediaries between the public and the Consorcio research staff. Before the arrival of the Consorcio to the study area, CHWs conducted home visits periodically for public health purposes, such as the identification of chronic coughers, vaccination, vector control, infant nutrition, and cholera surveillance. As part of the Consorcio protocols, CHWs were asked to recruit and follow up participants. Each time a patient dropped out of treatment, the CHW who had initially invited that patient to participate in the study was sent to visit him/her at home to discuss the importance of continuing treatment. CHWs received training to enable them to identify cases of persistent cough in the community. In addition to this general outreach, they were also sent periodically to visit shelters, jails, orphanages, self-support groups for patients with diabetes, and alcohol drug dependencies. In those locations, they explained the purpose of the study and identified coughers.

The initial strategic partnership between the Consorcio and the community health sector quickly evolved into true ‘camaraderie’, with close friendships, trusting relationships, and a strong sense of common purpose. One of the physicians working with the Consorcio said:

Warm and openly friendly relationships—what we have termed camaraderie—were evident in all the exchanges we witnessed between the representatives of the Consorcio and the members of the community health sector. The Consorcio staff nurtured this camaraderie by diligently living up to the promises they made to the community health workers:

In the context of the scarcity of health services and the marginalization described above, such reliability held particular importance to community health workers who saw it as a powerful gesture of respect and solidarity. This view was reciprocated by the Consorcio workers, who were impressed by the CHWs’ commitment to the well-being of local residents:

The camaraderie between the Consorcio and the community health workers was facilitated by a common view of the social importance of their public health mission. The shared commitment to the health of marginalized populations was evident throughout our interviews and field observations, and the Consorcio also provided other important opportunities for community health workers by providing specific educational sessions and by facilitating the CHWs’ access to patients in the community.

Ultimately, then, the Consorcio provided an opportunity and the necessary means to catalyze the efforts and motivations of the community health sector towards the common goal of addressing the local TB epidemic:

Humanising research: Being present in the lives of participants

Just as the Consorcio presented new opportunities for CHWs, the increased presence of the CHWs and other Consorcio members was generally seen by prospective research participants as an opportunity to have some of their own unmet health needs addressed:

While a number of study participants reported that they felt an obligation to help others by participating in the creation of new knowledge, most seemed to be keen to participate in the Consorcio’s studies primarily because the public health system had failed them. For example, after having to see three different doctors to get a correct TB diagnosis in the public health system, a patient enrolled in the Consorcio study reflected on the invitation she had received to join one of the trials:

During fieldwork, it became clear very quickly to us that patients in remote areas had not been accustomed to the kind of personal attention they had received from the CHWs and the other Consorcio workers during their participation in the trials. Although their enrolment might have been motivated initially by improved access to healthcare, it appeared that participants had rapidly come to trust the Consorcio and recognised that the Consorcio’s approach was shaped by a deep commitment to respectful treatment of all participants.

Establishing a presence in the community. With the frequent visits of team members and the home visits of the community health workers, the Consorcio established an unprecedented presence in the participating communities. The increased presence was particularly obvious in outlying rural communities, where access was generally more challenging. For example, during the rainy season, roads became dangerous and transportation was scarce. Many times, community health workers and study personnel walked long hours to be able to visit a patient who had missed an appointment. Community members we met commented frequently on the humility of the Consorcio team and their willingness to devote much of their time to them. A former tuberculosis patient who mentioned how difficult it had been to access regular healthcare described the experience:

The Consorcio leadership also insisted on the establishment of physical contact with participants in an effort to counter stigma and normalize attitudes towards people with TB. This was made explicit in directives to the outreach team. During our visits to participants’ homes with the research team and CHWs, we observed that handshakes and hands on shoulders were common practice. The significance of these gestures was not lost on participants. At one home, the mother of a girl who had completed the trial cried as she thanked the research team for not turning away from her daughter when she was sick. The Consorcio’s presence and the willingness to engage physically with participants seemed particularly important in neglected communities.

Presence as a form of responsiveness. Even though there was a general understanding that the Consorcio was conducting important research, the participating communities viewed the sustained interactions and attention they received from the Consorcio team primarily as signs of its responsiveness to the communities’ needs. “We gained trust, because they would always check us, our blood pressure and everything very well.” [I8, PT] This view was reinforced by the fact that the experience of dealing with the Consorcio contrasted sharply with that of seeking care in the two public hospitals in the study area:

Such experiences were dehumanizing and traumatic for patients, and they reinforced their perception that they were being actively shunned by the public health system:

In contrast, Consorcio representatives were viewed very differently:

The Consorcio was also present in local communities in more intangible ways. For instance, the Consorcio initiative streamlined access to treatment by coordinating the provision of drugs with the public health system and by decentralising care through community health workers and outreach teams. This contributed to the widespread perception that many things seemed better after the arrival of the Consorcio. Similarly, by discussing tuberculosis openly, the Consorcio not only helped teach local communities that tuberculosis could be treated effectively, it also helped alleviate the fear of marginalisation:

Underlying data

The authors are not able to make the supporting data public due the absence of consent on the part of participants. In some cases, excerpts relevant to this manuscript could be made available if they do not compromise the anonymity of research participants. Any party wishing to receive additional information should contact James Lavery (jlavery@emory.edu).