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

The Orizaba Health Region, in Veracruz, Mexico, has hosted Background: the research programme of the Consorcio Mexicano contra la Tuberculosis since 1995. The objective of this retrospective case study conducted in 2009 Methods: was to describe and explain the evolution and outcomes of the stakeholder and community engagement activities of the . Recorded Consorcio interviews and focus groups were coded to identify major themes related to the success of stakeholder and community engagement activities. The successfully managed to embed its research Results: Consorcio program into the local public health infrastructure. This integration was possible because the core research team tailored its engagement strategy to the local context, while focusing on a large spectrum of stakeholders with various positions of authority and responsibility. The overall engagement strategy can be described as a three-pronged endeavor: building a “coalition” with local authorities, nurturing “camaraderie” with community health workers, and striving to be “present” in the lives of community members and participants. The ’s efforts teach valuable lessons on how to Conclusions: Consorcio approach stakeholder and community engagement in tuberculosis (TB) research, particularly in developing countries. Furthermore, the health outcomes reveal stakeholder and community engagement as a potentially under-tapped tool to promote disease control.


Introduction
In the mid-1990s, it became clear that new initiatives were needed to step up the fight against TB in Mexico. The country's TB strategy, established in 1973 1 , came under scrutiny from a 1997 World Health Organization (WHO) Global Tuberculosis Programme evaluation 2 , which led to recommendations to improve the policies and management practices of the country's National Tuberculosis Prevention and Control Program. At the time, public health authorities around the world were confronting serious threats in the fight against TB: lack of precise, affordable diagnostic tools; long and demanding treatment regimens; multi-drug resistance; and high rates of latent TB. Against this backdrop, a group of Mexican researchers set out in 1995 to create the Consorcio Mexicano contra la Tuberculosis (Mexican Consortium Against Tuberculosis), a scientific partnership that aimed to tackle some of the country's most pressing TB challenges.
The work of the Consorcio spanned almost two decades and resulted in significant contributions. One of these was the prospective evaluation of the effectiveness of the WHO's Directly Observed Therapy -Short course (DOTS) strategy, a project that began as a pilot program led by the Mexican health authorities in Orizaba, Veracruz 3 . The study provided the Consorcio with an opportunity to assess the impact of the DOTS strategy on the transmission of tuberculosis in areas with moderate rates of drug-resistant strains 3 . The pilot program's success contrasted spectacularly with the mixed results of the previous control program, reducing TB incidence by more than half 3 . These results prompted the Consorcio to wonder what factors might have played a role in the high success of the DOTS strategy in Orizaba. Though stakeholder and community engagement (CE) had not been an explicit focus of the Consorcio 4 , its investigators wondered whether the nature of their interaction with the community might have contributed to the success of the research intervention.
The CDC has defined community engagement as "the process of working collaboratively with and through groups of people affiliated by geographic proximity, special interest, or similar situations to address issues affecting the well-being of those people through partnerships and coalitions that help mobilize resources and influence systems, change relationships among partners, and serve as catalysts for changing policies, programs, and practices" 5 . CE has become acknowledged as a cornerstone of ethical global health research, and it is increasingly gathering the attention of the TB research community specifically. Concerns have been reported in the literature over the fact that relatively few research sites have expertise in the appropriate conduct of TB research 6 . For this reason, it is crucial that lessons be drawn from the few sites that have such expertise 7 . In 2009 members of the Ethical, Social and Cultural Program for the Bill & Melinda Gates Foundation's Grand Challenges in Global Health Initiative 8,9 (RFB and JVL), were invited by Consorcio representatives to conduct a retrospective case study of the Orizaba DOTS trial to explore the contribution of stakeholder and community engagement to its outcomes. This paper presents the findings from this case study.

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 km 2 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 municipalities 10 . 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

Rural Urban
Households without access to municipal water 18% 6% Households with earthen floors 21% 8% Average years of formal schooling 7 years 9 years 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 .

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: "…one of the communities that was never visited by a policy chief before. We know that we live at a distant place and sometimes officials don't pay attention to us, even though we are all at risk of getting sick." [I7, CHW] At the time of our fieldwork, recent moves to decentralise the Mexican health sector 15 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: 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: 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: 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: " 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.

Discussion
The research programme of the Consorcio Mexicano contra la Tuberculosis offers an opportunity to draw lessons from an initiative that has had experience with the conduct of CE in TB research. The Consorcio is particularly exemplary in this regard because it successfully integrated its biomedical research projects with the public health system of the Orizaba Health Region throughout its active period from 1995 to 2012. This integration was possible because the core research team tailored its engagement strategy to the local context, while focusing on a large spectrum of stakeholders with various positions of authority and responsibility. This engagement strategy was three-pronged: building a "coalition" with local authorities, nurturing "camaraderie" with community health workers, and being "present" in the lives of community members.
Our findings suggest that the CE approach of the Consorcio satisfied almost all of the necessary elements of the CDC CE definition 5 . But initially the Consorcio paid very little attention to stakeholder and community engagement; the leadership did not view it as an integral aspect of their work. The initial impetus for formalizing the CE approach was ethical, but it quickly became clear to the Consorcio's leadership that respectful and ethical treatment of all of their stakeholders was also a complex management challenge. Over the course of its evolution, the CE approach became more explicit and proactive and better integrated into the day to day management of the Consorcio. From that point on, more specific efforts took place and clear expectations were communicated to the team regarding the respectful conduct of outreach. This organic development, although falling short of the more comprehensive recommendations made in the Good Participatory Practice Guidelines for TB Drug Trials 16 , successfully led to the establishment of trusting and cordial relationships throughout the Consorcio's extensive network of partners and stakeholders.
By presenting itself as an enabling force to help meet local health priorities, the Consorcio research team secured the support and collaboration of the local public health authorities. As a result, they were able to negotiate access to public health resources, such as collaboration with the community health sector. Given the limited resources of the Consorcio, it is likely that the necessary recruitment, retention and treatment of research participants would not have been possible without the collaboration of these partners. This collaboration was in turn successfully sustained because the Consorcio leadership actively promoted a warm and responsive attitude toward all its stakeholders and partners. This attitude emphasized trustworthiness, reliability, and respectful relationships, putting the trial participants' interests at the centre of all their activities. Simultaneously, given the social and political isolation of several of the communities in which the Consorcio was active, the human presence made possible by the Consorcio was deeply meaningful for community members and undoubtedly contributed greatly to their interest in the conduct of the trials.
Overall, this case study provides a number of important insights that may have broader relevance for CE in subsequent TB trials, and possibly in other global health research settings. First, building and sustaining the Consorcio coalition was facilitated by carefully aligning the research initiatives with local interests and needs. This was the case at a broad level when, for instance, the Consorcio tested the WHO's DOTS approach at a time when its applicability and relevance in Mexico were debated. The Consorcio also sought to understand better the epidemic of multi-drug resistant TB when local authorities began to realize that they had a limited understanding of the situation in the region. But responsiveness was also the case at more local levels, where the Consorcio leaders spent a great deal of time meeting with local partners, listening to their needs and concerns, and devoting time to exploring potentially constructive ways to leverage the Consorcio's value for the region. Although these synergies were largely coincidental, the Consorcio leaders also had considerable work to do to forge a shared understanding of the potential value among the partners. Importantly, the Consorcio leadership viewed the local public health authorities, scientific community, education system, and other local leaders and organizations, not simply as potential partners, but also as legitimate stakeholders in the Consorcio's research enterprise. This mindset led the Consorcio to view the establishment and fostering of strong, respectful relationships with these groups as having both strategic and ethical significance.
Second, the Consorcio's success has been highly contingent on its ability to integrate elements of the existing community health infrastructure. But it was the conscious attempt to nurture camaraderie and respectful relationships with public health workforce, including community health workers, agency and clinic administrators, physicians, and other volunteers in under-serviced and remote areas of the Health Region, that contributed most to the sustainability of the Consorcio. The community health sector served, essentially, as the human face of the Consorcio: it was the Consorcio's presence in communities. This was extremely important in the Orizaba region, where social marginalization and limited availability of, and access to, health services played a significant role in sustaining the TB epidemic.
The presence of the Consorcio had an indisputably positive impact on research participants. Although our retrospective case study approach cannot provide the necessary evidence to draw causal relationships between the community engagement activities described above and the outstanding health outcomes observed during the various research initiatives, it is not unreasonable to postulate some effect of these social processes-particularly the success in bringing health services to hard-to-reach communities-on the reported epidemiological outcomes. For example, by humanising the research process and making research participants feel valued, the Consorcio might have successfully nurtured participants' faith in self-investment-the belief that it is 'worth' taking active steps to care for oneself-in ways that may not have been familiar to them prior to their experiences with the Consorcio. This would appear consistent with the impact healthcare personnel's attitudes have been documented to have in other regions 17 .
If the CE practices we studied really had a synergistic impact and improved the epidemiological impact of the Consorcio trial, as the investigators have speculated, then effective CE may best be understood as an integral element of the public health intervention itself, rather than as a facilitator. As such, deep questions remain about the role of CE strategies, especially in the context of research with marginalized communities. Our findings support the potential for a positive contribution of CE to the epidemiological outcomes of a TB treatment trial. However, further research is needed on the range of possible ways an enhanced "human infrastructure" of respectful relationships 17 can have an impact on the behavior of individual participants during a trial. Pursuing these lines of inquiry may demonstrate that CE represents a critically under-developed resource for disease control more generally.

Limitations
To understand the origins and design of the Consorcio's CE approach and to gain access to current and former participants in Consorcio studies, this project was conducted in close collaboration with the Consorcio team. The presence of individuals affiliated with the Consorcio during the interviews and focus groups might have suppressed more critical feedback from some respondents and thereby introduced a source of bias. We aimed to address this by having the lead researchers (RFB and JVL) direct the interview and focus group questions, and thus control the agenda of the study. The host co-authors contributed a wide range of insights, elaborations, and contextual information throughout the research process-including during data collection. We also used a group analysis approach that allowed us to critically examine our initial impressions and conceptualizations of data on a daily basis during our data collection trips, identify any potential biases or unwarranted inferences, and flag them for further clarification during subsequent interviews and analyses.
Our perception is also that, given the deep, trusting relationships that emerged over time between the individuals affiliated with the Consorcio and our research participants, their presence during the interviews might in fact have positively helped suppress (at least in part) the role that ethnic, gender, and socio-economic differences between the lead researchers and many of the research participants might have otherwise played.
Given the nature of this qualitative case study, we are unable to make any causal claims about the relationship between the CE practices and the higher-than-expected epidemiological outcomes of the Consorcio's DOTS trial. Although our study was not designed to explore them specifically, we were able to observe some of the 'Indicators of Success in Community Action' that have been reported in the literature 18 . The emergence of a 'warm, friendly atmosphere' is one we reported above. We were also able to identify some of the gaps in the public health system that likely played some role in sustaining high rates of TB. By helping address these, the Consorcio is likely to have had a long-lasting impact locally. The Consorcio's CE practices also contributed to the "human infrastructure" of the public health system beyond the trial itself. Although our study falls short of a causal explanation, we believe it provides useful insights about how greater attention to strong and respectful interpersonal relationships might facilitate improvements in public health outcomes more generally.
Ultimately, the standing uncertainties about the causal impact of the Consorcio's engagement activities on the effectiveness of TB control strategies simply add credibility to the call for improvements to the science of CE in global health research 19-21 . Improving our understanding of the potential impact of CE is particularly crucial in the context of TB research. Indeed, even though attention must be paid to how policies and poverty directly affect the TB epidemic 22 , recent modeling efforts have made clear that renewed research will be an indispensable component of the future efforts to curtain the ravages caused by TB.

Conclusions
Despite the lack of an explicit stakeholder and community engagement strategy at the outset, the Consorcio Mexicano contra la Tuberculosis successfully integrated its research agenda and operations with a complex public health system. This effective integration enabled, and likely enhanced the outcomes of, several key TB studies in the region and brought an unprecedented level of TB care to its research participants. These outcomes were achieved by building a coalition with local authorities, nurturing camaraderie with community health workers, and establishing a presence in the lives of community members.

Data availability
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).
Author contributions RB and JL designed the study, collected and analysed the data, and drafted the manuscript.
LGG, LFR, SCQ, and MPM made substantial contributions to the study conception and design, and helped acquire and interpret the data. APL contributed to interpretation of data and revised the manuscript for important intellectual content. All authors revised the article critically for important intellectual content and approved the final manuscript.
authors were invited to conduct a retrospective case study, they opted to conduct a prospective qualitative research study aiming to collect the views and experiences of X on Y, and that this paper reports on the results from that study.
How were participants selected for this study? What were they (thought to be) representative of? Are the results just informative about the CE activities at Orizaba, or the CE activities for the wider DOTS/Consorcio work? Presumably, when you say 'they needed to be exposed to the activities of the Consorcio' you specifically intended for interviewees to have been involved with/exposed to the activities of the Consorcio? How is that expectation true for the categories of engagement interviewees you selected? And were there other types of interviewees you could have selected but didn't?
You say you used 'field observations' of the Consorcio CE process, but in the introduction you indicated that the work reported in this paper involved a 'retrospective case study'. How, then, did you conduct field observations, and what were you observing?

Results:
Under 'fragmentation' (1 section of the results), I think it is really important to provide some contextual information. In the introduction, you indicate that the Consortio worked for two decades, so when people recall that 'before the Consorcio arrived', are they reflecting on what the healthcare system looked like two decades ago? Were your interviewees even old enough to remember that?
When you say 'existing community engagement infrastructure of the public health service', do you actually mean that the phs had an existing 'community engagement' programme in line with the CDC definition provided?
Discussion: Taken at face value, it seems to me like the Discussion is not always entirely objective or neutral. Take for instance this section: "This collaboration was in turn successfully sustained because the Consorcio leadership actively promoted a warm and responsive attitude toward all its stakeholders and partners. This attitude emphasized trustworthiness, reliability, and respectful relationships, putting the trial participants' interests at the centre of all their activities." This section is problematic not in the least because a) your interviews/FGDs/observations all seem to have been conducted under the gaze of Consorcio researchers and leadership; b) Consorcio leadership apparently are co-authors on the paper. Was the experience really that exemplar? And were those words coming from your interviewees? (About the 'warm and responsive attitude' and 'putting participants' interests at the centre of all of their activities'