Community-Engaged Health Communication Strategies During the COVID 19 Pandemic: Experiences From Southern Andean Peru

Abstract

This study examines the work of a collective of community-based Indigenous health rights activists in southern Peru who, at the height of the pandemic, designed, recorded, and disseminated seven Quechua language and culturally tailored Public Service Announcements for radio broadcast to provide information about COVID-19 vaccines. The activists took initiative amid a dysfunctional vaccine roll-out, when vaccination rates in their region were among the lowest in the country, and when mortality rates from COVID-19 were very high. The experiences of the activist collective, including their participatory, community-based approach and their connections with health workers, demonstrate the importance of pre-existing, strong, respectful relationships between communities and health systems in times of public health crisis. This is not an easy task given that relationships between communities and Peru’s government-run health system are complex and shaped by dynamics of power, including colonial legacies and contemporary injustices. This case critically reflects on the notion of resilience and provides insights into the enduring struggles by Indigenous activists to decolonize and strengthen the public health system by pushing for forms of community participation based on substantive partnerships with community-based actors that genuinely integrate their knowledge and expertise.

Introduction

In this article we examine the work of a collective of community-based Indigenous health rights activists and allies (“the Collective”) in the southern Andean region of Puno, Peru. At the height of the deadly COVID-19 pandemic in late 2021, this team rapidly developed seven Quechua language Public Service Announcements (PSAs) for radio broadcast to provide information about the COVID-19 vaccine. At the time, vaccination rates in Puno were among the lowest in the country and the government’s Spanish-language and urban-centered vaccine campaign seemed ineffective at building trust among the region’s large rural and Indigenous populations. Members of this Collective, made up of Quechua speaking Indigenous women activists from three Community-Based Organizations (CBOs) in three rural districts in southern Peru, along with a small number of regional civil society allies, had collaborated in various struggles for health rights over more than 25 years. Faced with the absence of effective state action in a crisis, this Collective quickly mobilized people and resources to create tailored radio messages to address the mistrust and misinformation about COVID-19 vaccines prevalent in their communities.

The central focus of this article is not on vaccine hesitancy—an important topic that has attracted significant attention. We agree with scholars who note that vaccine hesitancy is too often used as code to stigmatize the distrust in medical authorities that marginalized people may have developed due to historical and ongoing structural racism and oppression in the health system.^1,2 This is certainly relevant to our case in Puno. However, our primary objective here is to explore and analyze the experiences of the activist Collective in its effort to creatively respond to vaccine hesitancy by designing, recording, and disseminating PSAs for the benefit of their communities, in the context of an unequal neoliberal health system destabilized by crisis.

This provides several revealing insights. We argue that strong, respectful relationships between communities and health systems are essential in times of public health crisis. Their absence can have serious and even deadly consequences during health emergencies. These relationships must be developed over time, outside of crisis periods. In Puno, this is not an easy task given that relationships between communities and the government-run health system are complex and shaped by dynamics of power, including colonial legacies and contemporary injustices. Our intention in sharing this case is also to shed light on the deeply embedded inequalities that shape the government-run health system in Peru, and what this means on a practical level for civil society actors in Puno compelled to take up this work during a time of crisis. This case critically reflects on the notion of resilience and provides insights into the enduring struggles by Indigenous activists for broad health rights in Southern Peru. This includes their efforts to decolonize the public health system, including pushing for substantive integration of an intercultural focus in the provision of publicly provided health services in their local facilities. ¹

We draw on conceptual and empirical literature from the interlocking areas of health communication, health equity, decolonization of health systems, and critical resilience to inform our analysis and discussion.

Methodology

Researcher Positionality

We are an interdisciplinary team of university and practitioner-based researchers from Peru and Canada. Three co-authors are from Puno, Peru and are Spanish/Quechua speakers with 30 years of experience in health justice work there, including ongoing collaborative work with the community-based Indigenous health activists featured in this article. One co-author is a senior health policy specialist and medical doctor based in Lima, the nation’s capital. Another is a recently trained medical doctor in Peru and an independent health researcher. Two co-authors are university professors, one in Lima, the other in Canada, both of whom focus on community-based health justice issues in social science programs. Together, from our diverse perspectives and life experiences, we share a commitment to engaged research and action to promote the fulfilment of health rights.

The work presented in this article is based on a qualitative case study approach, in line with Malcolm Tight’s understanding of case study research as “small-scale research with meaning.” ⁵ This allows us to examine a case bounded “within certain parameters, such as a specific place and time” (p.98). ⁶ Our case is nested within a larger multi-year research project, Challenging Inequalities, that examines more than 25 years of health rights activism by a cohort of activists from three Community-Based Organizations (CBOs) in three districts in rural Puno, Peru. In this article we will refer to members of this cohort as “Health Defenders” based on their history of community-based advocacy for health rights. Separate from our larger research project but during the same period, three of our Puno-based team members independently initiated the creation and dissemination of the COVID-19 vaccine information radio PSAs as another iteration of ongoing efforts to challenge social and health inequalities, in collaboration with the Health Defenders from the three Puno CBOs. We will refer to the group of practitioner/health advocates (and now researchers on our participatory project) as the “Allies.” Together, we will refer to the team of Allies and Health Defenders as “the Collective.” Importantly, these actors have all collaborated with one another many times over more than 25 years on different community-based health justice struggles in the region. All are also connected as members of the Puno chapter of the Peruvian national health rights umbrella organization, ForoSalud.

Methods: Data Collection and Analysis

Data used in this case was collected using a variety of methods. In early 2021, two research team members conducted seven qualitative phone interviews with Health Defenders in Puno during the lockdown stage of COVID-19. A group interview with the three Allies involved in the creation of the PSAs was conducted over Zoom in late 2021, following the diffusion of the vaccine messages. All interviewees and focus group participants provided verbal informed consent under the ethics protocol approved by lead author’s university for the overall Challenging Inequalities project. The interviewers and focus group facilitators documented and dated the provision of verbal informed consent in a research log stored in a secure location by the research team. Findings from the first sets of interviews were enriched and deepened through seven key informant interviews conducted in 2022 with staff from public institutions familiar with the health rights work of the Collective members. Finally, three focus groups were conducted in March 2023 with a total of 30 Health Defenders from the three CBOs to learn about their struggles for health rights, including their activities during COVID-19 and the creation of the PSAs examined in this case. Guides with open ended questions were used in all interviews and focus groups. All interview and focus group data was organized using Atlas-ti software and three team members used thematic analysis to code and analyze the information, including drafting reflective memos. ⁷

The preliminary results were discussed and enhanced during a series of participatory feedback sessions conducted over Zoom at different time points throughout the data analysis process. This allowed us to use our joint “insider/outsider” vantage point throughout several rounds of analysis by the co-authors, with ongoing attention to reflexivity. All preliminary results were discussed with members from the three Puno CBOs through a participatory workshop in January 2024. The draft manuscript for this article was also discussed with the CBO members in a June 2024 participatory workshop. Our myriad social locations and perspectives have provided opportunities to enhance our analysis and understanding of the results.

Case Study Context

Inequality in Peru and Puno

Peru is a country with deep divisions, where race, gender, and Indigeneity intersect with class and geographic differences.^8,9 The state founded in Peru after Independence was organized based on the domination of the Indigenous population by the Creoles (descendants of Spaniards born in Peru), who maintained the privileges of the old colonial elite. This original division has continued over time, impeding the possibility of effectively building a nation that includes all Peruvians. ¹⁰ Historically entrenched inequalities are embedded in state institutions. ¹¹ This includes the government-provided health system and is reflected in inequitable health indicators for Indigenous Peoples. ¹² Puno, where this case study is situated, is a majority-Indigenous region primarily located in a high-altitude plateau in the central Andes. According to the 2017 national census, 90.7 percent of the population in Puno over 12 years of age self-identified as Quechua (56.98 percent) or Aymara (33.72 percent). In the same census round, nearly 43 percent of the population over 5 years of age identified Quechua as their first language, while another 27 percent identified Aymara as their first language. ¹³

COVID-19 and Peru’s Health System

Peru was one of the first countries in the region to introduce a comprehensive set of responses to the COVID-19 pandemic, including a national lockdown and social protection measures. ¹⁴ However, the country experienced high infection rates and an exceptionally high mortality rate—one of the highest in the world.^14,15 This was in part due to social inequalities, for example 74 percent of the population relies on daily informal wage labour for their livelihoods. ¹⁶ This made adherence to lockdown measures difficult. ¹⁷ Scholars also attribute high mortality rates to structural issues in Peru’s health system, including its overall weakness and its fragmented and unequal character. Peru maintains one of the lowest rates of investment in health care in the region (5.5% of GDP in 2017). ¹⁵ When the pandemic struck, the health system was already running at full capacity and was poorly positioned to adapt to the shock. ¹⁵ As well, Peru’s health system has a highly fragmented and unequal structure where income, gender and geographic location determine access to health services. ¹⁴ As noted above, social inequalities are embedded in the health system where informal workers and the rural poor, many of whom are Indigenous, are left to rely on the system’s least generous tier, with the lowest level of service coverage and a history of underfunding.^14,18 This lowest tier of the system, which we refer to here as the publicly provided health system, ² was the least effective at responding to the COVID-19 emergency.

Results

Mobilizing Social Connections During the Early COVID-19 Crisis in Puno

In February 2021, the Allies, a small group of practitioners/health advocates, were working as researchers on a project with the other co-authors of this paper examining 25+ years of community-based health justice activism with the Health Defenders. The Allies had been interviewing several of the Health Defenders by phone as part of this study. These interviews coincided with the ongoing COVID crisis and strict lockdown measures. The Health Defenders talked about the desperate situation they and their communities were facing. Many health facilities were entirely shuttered, and those that remained were grossly understaffed, with few resources, and provided services only to COVID patients in limited numbers. ³ They explained that community members were frequently reluctant to go to the health facilities as they observed that relatives and friends who went, often died there. The Health Defenders also explained that people in their communities were drawing on traditional Quechua Indigenous health knowledge to help protect their households against COVID. This included many ancestral methods, for example, preparing a range of teas with traditional herbs and using them both as a drink and to steam their houses.

Understanding Slow COVID Vaccine Uptake in Puno

In early 2021, the COVID-19 vaccines, developed and approved in record time but distributed globally through a “profoundly unequal roll-out,” (p.3091) ²² finally became available in Peru. Early distribution focused on Lima, the nation’s capital and spread to other regions. However, the vaccines were slow to arrive in Puno, and when they did, uptake was initially very limited. In August 2021, the COVID-19 vaccine coverage in Puno was only 31.8 percent, the lowest in the country. ²³ By November 2021, coverage in Puno improved to approximately 60 percent. However, the inequities in COVID-19 vaccination coverage across the country were stark. Puno remained one of the three regions with the lowest vaccination rates at a time when several others had reached at least 90 percent coverage. ²⁴

Concerned by the stalled vaccine roll-out in Puno, Allies and Health Defenders had another round of phone conversations. The Health Defenders explained that their communities lacked accessible, confidence-inducing information to respond to their questions and concerns about COVID-19 vaccines. Instead, unchecked rumours about the vaccines from a variety of social media sources were circulating in their communities. For example, some community members had heard that once vaccinated, a person would only live another 2 years. Others had heard that the vaccines made young people sterile.

Through these phone conversations, the idea emerged to work together to produce health communication messages in Quechua in the form of short PSAs to be aired on local radio stations. The Allies and community-based Health Defenders (the “Collective”) had already collaborated a decade earlier to create radio-based health communication messages, validated by public health officials, that focused on addressing the high rate of maternal mortality in the region. They therefore knew it could be an effective strategy and they had a clear sense of what would be necessary to create and disseminate reliable information in this format.

Dysfunctional Vaccine Roll-Out at the Regional Level

To gain further insight, some members of the Collective approached various personal contacts in the regional capital, including staff from the regional office of the Defensoría del Pueblo (Peru’s National Human Rights Ombud’s Office, which we refer to as the Defensoría), and a small number of individual health workers from government-run health services. These contacts spoke of a battered regional health service, ill-equipped to deal with the COVID-19 crisis. When regional health authorities received the vaccines, there were no culturally and linguistically tailored information campaigns in place to provide information to Indigenous communities in Puno. Changes in leadership plus a shortage of health workers all compounded difficulties for the initial mobilization of vaccines in the region. The Allies also learned that no budget had been allocated for targeted health communication around vaccines for use in the local context. Instead, limited information had been adapted quickly from other countries and was available only in Spanish. One health worker noted that their colleagues were discouraged from explaining to patients how the vaccines function, for fear that this would cause people to refuse to be vaccinated.

Information from public reports echoes this assessment of the early vaccine roll-out gathered by the Allies through their social networks. For example, as early as March 2021, the Defensoría del Pueblo called for the Ministry of Health to develop a specific plan to make the COVID-19 vaccine more accessible to Indigenous Peoples, a plan that would include “the development of information materials in Indigenous languages” (p.46). ²⁵ In July 2021, the national Ministry of Health formally adopted an official protocol for vaccination against COVID-19 for Indigenous Peoples and shared it with all the regional health authorities. However, in the initial stages of vaccine roll-out in Puno, the protocol was not widely shared or implemented in the region. ²³ In August 2021, staff from the Defensoría del Pueblo’s Puno office met with regional health authorities to discuss challenges with the roll out of the COVID-19 vaccine. The Defensoría called on regional authorities to ensure that clear information about the vaccine was available in Indigenous languages relevant to Puno, and suggested that local radio would be a useful communication format. ²³

In September 2021, monitoring visits by staff from Puno’s Defensoría del Pueblo to local health facilities in nine subdistricts confirmed the difficulties with vaccine implementation. ²³ The Defensoría learned from health personnel of the fear, mistrust, and resistance they encountered from many community members when they offered the COVID-19 vaccine. However, none of the subdistrict health authorities had received a budget to create culturally and linguistically accessible vaccine information for Indigenous communities. Few were aware of the health ministry’s COVID-19 vaccination protocol for Indigenous Peoples. Hardly any of the subregional facilities had regular internet access to receive the latest information and policies related to the pandemic. Many reported only minimal coordination with their district and regional health authorities. All the facilities were desperately short of health personnel, and few had personnel with the linguistic capacity to liaise directly with community members in Quechua and/or Aymara. Most health facilities lacked basic transport to reach communities to conduct on-site vaccination roll-out, and no additional funds were provided to cover such costs. A few facilities had organized “brigades” to increase access to the vaccines. However, even when they managed to reach communities, the health personnel still reported resistance to vaccine roll-out in several subdistricts. ²³

Designing the PSAs Using Participatory Strategies

The Collective of Allies and community-based Health Defenders was formed against this challenging backdrop in Puno. Pooling their different types of expertise and experience, the members created, recorded, and disseminated to radio stations a total of seven public health service announcements (PSAs) in Quechua to respond to different concerns expressed by community members about COVID-19 vaccines. We outline the process here.

The participants drew on their transnational solidarity network to mobilize a tiny budget for basic costs. It only covered essentials, for example travel to central locations to enable in-person collaboration and recording, photocopying of materials, and the purchase of the necessary safety equipment (masks, sanitizer). All labour to create the PSAs was provided on a voluntary basis.

To design the PSAs, the Collective members convened a meeting in each of the Health Defenders’ home districts of Azangaro, Ayaviri, and Santa Rosa. Each session involved three Allies and approximately a dozen Health Defenders. The Allies had drafted six initial script ideas for radio spots based on their recent phone conversations with the Health Defenders and other stakeholders. These were an entry point for conversation, critique, revision, and the creation of new drafts during the meetings. The scripts covered topics the Health Defenders had identified as concerns in their communities. These included how vaccines work in the body, how the COVID-19 vaccines are made, who is most at risk from COVID, the importance of young people and children receiving the vaccine, and the importance of getting vaccinated as a way of helping to protect one’s family and community.

During the meetings, the Health Defenders translated the scripts into Quechua, simplifying and clarifying the messages using everyday language. The following script provides an example of one of the seven PSAs:

Title: Why it is important to get vaccinated?

[Cheerful regional music in background, rises and subsides. Two people begin a conversation].

Isabel: How are you doing sister? Hey, we know why it is important to get vaccinated, right? Susana: I’m fine sister. Yes! If we all get vaccinated, fewer of us will go to the hospitals. The coronavirus will no longer be able to kill us so easily. Isabel: And all the vaccines have been tested and are good. That’s why everyone, men and women, should get vaccinated. Susana: That’s always the way it is, if we get vaccinated, we will be healthy, our family will stay healthy. Isabel: Yes, our neighbors, our communities will be more protected, and we will all be healthier. Susana: If we all get vaccinated, we will be safer and more protected. Isabel: But one vaccine alone does not give us enough protection. Susana: True. We need two doses of vaccines. Then we will be protected. It is best to get vaccinated with both doses.

[Cheerful regional music rises and subsides]. Announcer: A ForoSalud production. [Music rises and fades away]. (Unpublished PSA Script, ForoSalud Puno, 2021).

While making the scripts, the Health Defenders stressed the need to record the PSAs with first-language Quechua speakers and argued that female voices would be a welcome departure from the more common and formal male radio announcers often featured on their local radio stations. In each of the three sessions, two Health Defenders volunteered to provide the voices for the recorded PSAs.

The Collective also shared the revised scripts with key government health personnel in the three districts. They were met with a range of responses. In one district, staff had a history of working with members of the Collective. They were very supportive, offering guidance to ensure the messages were factually correct. Some personnel in that district even had their own specific requests. For example, the District Health Director asked that the PSA scripts include information that emphasized the importance of returning for a second vaccine dose. Another health worker, concerned about deaths among pregnant women in the region, urged that a seventh PSA be added to provide information and encourage pregnant women to get vaccinated. The Collective members agreed and created a seventh script. In the other two districts, Collective members no longer had strong direct ties with senior health personnel due to staff turnover. This made it difficult to arrange meetings and to collaborate. In one of these districts, health officials initially refused to meet with Collective members at all.

Recording and Disseminating the PSAs

Following the in-person work in the three districts, the Collective members exchanged revised scripts over WhatsApp to finalize them. They then recorded the PSAs in each of the three districts. They used simple equipment, including a small microphone and a low-end cellphone to record in MP3 format. An Ally edited the clips using Audacity, a widely available software. The Health Defenders chose background musical themes familiar to their specific communities.

One question the Collective needed to address was how to credit the PSAs. All the participants were members of the Puno chapter of ForoSalud, a well-known national umbrella health rights network. While the organization was hardly active at the national level at that time due to various difficulties, it still maintained a solid reputation in Puno and was recognized by regional health personnel. After some discussion, members of the Collective decided that the PSAs would be credited to the health rights network. Regionally, the network offered a reputable, inclusive, and shared identity when publicly presenting their health communication work.

To disseminate the PSAs, the team drew on social networks they had developed with regional radio stations years earlier when they created PSAs to address maternal mortality. The team was able to convince stations to air the new PSAs free of charge, given the gravity of the COVID-19 pandemic. The PSAs were also broadcast and disseminated as far as the other end of the country in the north, and on a national radio station. In the end, the health communication initiative outlined in our case was carried out in only 6 weeks, from initial concerns about low vaccination numbers in Puno to the launch of the Quechua language PSAs over several radio stations.

It is worth noting that once the Collective’s PSAs were completed and broadcast on radio stations, the regional government’s Ministry of Health requested permission to translate them into Aymara, the other main Indigenous language in the region. The Aymara version was jointly credited to both the health rights network and the Ministry of Health.

Discussion

What Can We Learn From the Role of Civil Society in the Rapid Creation of Radio PSAs in This Case?

The PSAs and the Promotion of COVID-19 Vaccine Uptake in Puno

The Collective members created the PSAs to respond to what they saw as an urgent need for accessible COVID-19 vaccine information in Quechua. This was a local intervention, conducted on an emergency basis by volunteers due to the inaction of public health authorities. There was no systematic tracking of distribution or airplay of the spots, or any pre-post information gathered to measure impact. The Collective mobilized temporarily to make this intervention, after which members returned to their other projects and busy lives. We therefore do not attempt to comment on the efficacy of the radio PSAs in promoting vaccine uptake among Quechua-speaking populations in Puno, or more widely. Vaccination rates did eventually rise across the region, likely driven by a confluence of factors beyond the scope of our research. By the end of 2021, coverage in several parts of Peru had increased, although inequities still existed, especially in Amazonian regions. ²⁵

Our empirical data does suggest that the Collective designed and carried out a PSA intervention in line with what national and international research has also recommended. ⁴ These studies recognize that groups that have been made marginalized, including racialized and Indigenous populations, often experience systemic barriers to vaccination ²⁷ and they encourage close community engagement to identify and address these barriers.^28,29

Scholarship on health communication and vaccine uptake emphasizes that this is “a two-way process” which requires “listening and telling” essentially “in equal measure” (p.4213). ³⁰ However, for groups that have been excluded, developing appropriate messaging also involves addressing a lack of trust in health authorities resulting from a long history of unethical practice and research on racialized and Indigenous populations, and the persistence of structural racism in the health system.^1,27 These studies emphasize the need to go beyond “superficial tailoring” of messages to incorporate “a deeper knowledge of the culture, values, and preferences” (p.156) of excluded groups. ²⁸ This entails “collaborating with respected community members” in order “to build trust and relatability of messaging” (p.e3129827-3). ²⁷ However, it also calls for “true partnership” (p.2) with CBOs and leaders from marginalized groups ¹ involving “community access into all aspects of the process” (p.156). ²⁸ Early in the COVID-19 pandemic, researchers noted the importance of participatory engagement in vaccine roll-out. For example, Burgess et al. recommend devolving the “power of design and implementation of communication strategies to local actors, supported by evidence syntheses, enabling them to mobilise local expertise that can engage with and shift attitudes on vaccines and wider government handling of the COVID-19 pandemic” (p.10). ³¹

The Collective based its work on this kind of community engagement, particularly through the involvement of the community-based Health Defenders at all stages of the process. It was through direct dialogue within the Collective that members were able to gain a nuanced understanding of the crisis facing rural areas in Puno. The Health Defenders provided detailed knowledge about questions, concerns and barriers to vaccination in their communities. The Allies then drew on existing social relationships to access official information from health workers and ensure the relevant technical accuracy of the PSAs. In the final steps of the process, Health Defenders edited, shaped, and recorded the Quechua language radio scripts to best resonate with their target audience. In short, the Collective was able to create relevant PSAs that were broadly in line with best practices in a short period of time and on a tiny budget.

Other initiatives in Peru also sought to design COVID-19 vaccine communication strategies for highly affected communities, but these happened on a patchwork basis. For example, Peru’s regional Ministry of Health in the Amazonas department used multidisciplinary teams to conduct intercultural dialogues with Awajún and Wampis Indigenous communities, areas where the pandemic had hit early and hard. ³² These initiatives arose following strong demands from Indigenous organizations and recommendations from the Defensoria’s Office to implement bilingual and culturally relevant communication strategies for Indigenous Peoples. ²⁵ Also, several community radio stations in the Amazon region worked daily to combat disinformation about COVID-19 vaccines, as well as to respond to queries about the pandemic and vaccines from Indigenous communities. For example, this was the case with the radio stations Inspiración Nauta and La voz de la Selva in the Amazonian department of Loreto, radio and television programs made by the Shipibo-Conibo from Ucayali, information from the radio station in Madre de Dios, and the Ama Llulla network that is linked to local radio stations in different regions and is made up of communicators with intercultural training. ³³ The strategic importance of the radio and articulation with local authorities to disseminate information on COVID-19 vaccination in an Awajún community in Amazonas has also been documented ethnographically. ³⁴ However, there are no detailed evaluations available that analyze the effectiveness and scope of these communication campaigns.

Efforts were also made in the Andean department of Apurímac, where the government’s health, education and culture sectors collaborated on vaccine communication messages in multiple Indigenous languages. ³⁵

Some national NGOs in Peru also played a role in designing vaccine communication strategies. For example, one major Peruvian NGO received an international grant to train 150 communicators from several regional Ministry of Health networks and their allies. This large initiative unfolded over a longer period of time than the one highlighted in our case study and did not include the department of Puno. It also differed from the Puno case through its emphasis on working primarily with health communicators connected to regional Ministry of Health offices, although sometimes in alliance with other key stakeholders. ³⁶

In the Latin American region more broadly, a report from PAHO in 2022 highlights stories from representatives from various countries, including Peru, Bolivia, Colombia, Ecuador and Guatemala, who outline efforts to promote COVID-19 vaccination among hard-to-reach populations. Similar to the process used in Puno, these accounts emphasize working with local Indigenous authorities, identifying trusted voices within communities, using relevant languages, and developing culturally appropriate messaging. ³⁷

The Importance of Building Strong Social Relationships in the Context of Primary Health Care

⁵ This case shows the importance of social relationships of trust needed to quickly carry out this kind of work. These relationships are more difficult to create during a crisis. Pre-existing relationships linking Health Defenders and trusted Allies were fundamental to the success of this initiative. The personal ties, as well as the knowledge and skills, that these activists had developed over years of struggling to improve the quality of their local health services allowed them to do something the state had failed to do in Puno: rapidly create culturally and linguistically relevant messages to demystify the COVID-19 vaccine for their communities, areas with a high mistrust of state health services based on a history of discrimination and poor-quality treatment.

This case suggests that government-run health services must prioritize and invest in primary health care services that foster respectful, reciprocal, sustained relationships with communities. The Peruvian government-run health system has not managed to do this effectively, as evidenced by the relative low number of health system-community partnerships they could easily mobilize at the beginning of the COVID-19 vaccine roll-out. ²³ At a subdistrict level, some of the individual health facilities did eventually build partnerships with community actors to help make the COVID-19 vaccines more accessible. ²⁵ But this took time, delaying informed access to potentially life-saving health inputs. Investing in substantive community connections when times are calm could prove invaluable during times of crisis. ³⁹ These relationships could offer health services pathways to collaborate more consistently with civil society actors, ideally building trust through respectful, responsive service provision and a respect for medical pluralism. This could facilitate collaboration during emergencies and offer opportunities for health workers to learn from community-based expertise. Globally, the importance of these pathways for collaboration and communication between health systems and civil society during public health crises is consistent with recommendations gleaned from both the COVID-19 and other public health crises, and the need to foster more resilient health systems.^40–45

Arguably, the health system’s failure to prioritize the creation of this type of tailored health information could be attributed to the chaos of the COVID-19 crisis in Peru and the near collapse of the primary health care system. Health workers in Puno worked under extreme conditions during this period. They lacked adequate budgets, support, personnel, and basic infrastructure. ²³ Many were exposed to terrible risks without sufficient protection.

However, the crisis in primary health care in Peru predates the COVID-19 pandemic and reflects the longstanding exclusion of Indigenous peoples in the health system. It is precisely these types of struggles that initially brought together the members of the Collective and that have continued to inspire their activism. Since the 1990s, these community-based Health Defenders and Allies have collaborated on various initiatives in Puno to promote government provision of more inclusive and effective district health services. This includes advocating for recognition of intercultural birthing practices in their local government-run health facilities in the late 1990s-early 2000s, and more recent citizen-led governance of their district health services to address ongoing mistreatment and promote better quality health care provision for their community members.^46,47

The health system serving low-income people, including informal workers and many people from rural and Indigenous communities, has remained overextended and underfunded since its inception.^14,48 In addition, despite the existence of some progressive national policies, the health system has failed to effectively implement an intercultural approach to health care that values and integrates Indigenous knowledge and expertise in a more horizontal manner.^4,49 This segment of the health system has not been built to be either inclusive or resilient, as the pandemic has vividly demonstrated. This reflects the low priority placed on those whom the system serves. This was immediately apparent in the Amazonia regions of Peru in the early days of the pandemic, where the COVID-19 death toll was inequitably high among Indigenous Peoples.^4,50,51 We agree with Topp ⁴³ who, in discussing the literature on resilience in health systems, observes that more emphasis needs to be placed on power relations and agency. ⁶ According to Collective members, uneven power dynamics helped drive some of the initial reluctance about COVID-19 vaccines among community members. For example, as noted by the Collective, some health providers’ initial refusal to clearly explain the function of the COVID-19 vaccines in people’s bodies is highly paternalistic and disrespectful of people’s right to have agency and choice over their own bodies and health decisions.

The challenge to strengthen primary health care and build respectful, sustained relationships between publicly provided health services and communities cannot be disentangled from the urgent need to decolonize health systems^52,53 or from broader calls for decolonial practice.^54,55 This would involve, among many things, bottom-up approaches, respect for interculturality and medical pluralism, including true recognition of the value of Indigenous skills and knowledge, as well as reliable and adequate public funding. The struggle to decolonize health systems and address longstanding inequities is a political one rooted in deeply entrenched historical legacies, a reality that Collective members from our case know all too well given their efforts to promote health justice in Puno over nearly 30 years.

Citizen-Led Struggles for Health Justice During Public Health Crises: Resilience and the Neoliberal State

The reliance on volunteer civil society action in Puno to fill in crucial gaps left by the state for the timely provision of intercultural health communication during a massive public health crisis recalls a critique that has been advanced in the literature on the idea of “resilience.” The notion of resilience has attracted considerable attention in recent years in fields such as public health, psychology, and disaster management, as scholars have developed a paradigm to understand how people, systems, and communities can deal effectively with adversity.^56,57 At its most basic level, resilience concerns “the ability to respond to stressful or traumatic situations in healthy or positive ways” (p.339). ⁵⁸ Usefully, the concept focuses on capabilities and “provides a counter-narrative to discourses of vulnerability and social suffering” (p.439). ⁵⁹ While this is positive, critics note that for oppressed and excluded groups, an overreliance on resilience thinking places the onus unfairly on them “to become robust to structural, institutional, and interpersonal forms of discrimination,” (p.340) ⁵⁸ or to bear “the costs of resilience strategies” needed to make change (p.1454). ⁶⁰

This critique speaks to our case study. The Collective acted to try to help protect communities during a crisis, and carried out important work that should be recognized and valued. But we should also interrogate why this civil society action was necessary. The resilience shown by these activists is demonstrated through their creativity, mobilization of skills and resources, and capacity to draw on social networks. However, it also involved unpaid labour, personal risk during a global pandemic, and a lack of formal acknowledgement by the state’s largely biomedically-based health system of the value of Indigenous health and social expertise during a public health crisis.

Peru is an upper middle-income country whose highly unequal health system is the result of political choices and enduring legacies shaped by the coloniality of power. ⁶¹ The case study highlights the expertise and actions of a group of civil society actors in Puno during the height of the COVID-19 pandemic. It also shows how the weakness and exclusionary nature of the health system can impose a relentless responsibilization on individuals and communities already made marginalized in an unequal society—dynamics that only intensify in times of crisis. While it is a single study, research from other parts of Peru, for example the Amazonia region, provides other examples of creative, effective Indigenous community-based responses to the state’s failure to address their health needs,^4,62 and points to the broad, systemic scope of these issues. As well, there continues to be other innovative scholarship underway that explores the myriad ways Indigenous communities in Peru confronted the pandemic in the face of weak state response. ⁷

This case study has several limitations. First, as noted earlier, we do not have data concerning radio listeners’ reactions to the radio spots that were aired during the pandemic. Our case study is based on information from a specific, short period. The circumstances of the intervention, and the challenges of data collection at the height of a global pandemic, made systematic follow up impossible. Second, our tight focus on PSA development to promote vaccine uptake during the pandemic does not include space for an exploration of pluralistic approaches to health that were very important and relevant. Earlier interviews with the community-based Health Defenders in our main study did point to the use of ancestral health knowledge alongside biomedical COVID-19 care, in the absence of biomedical COVID-19 treatment and care, and/or in place of biomedical COVID-19 care and prevention. This discussion is beyond the scope of this current case study, but we note its absence as a limitation. Finally, we recognize that our “insider-outsider” research team, which consists of researchers external to Puno and practitioner/researchers who are from Puno and part of the “Collective” examined in this case, offers both advantages and particular methodological complexities.^63–66 The insider positioning of some of the co-authors of this article offers valuable analytic perspectives mediated by cultural, linguistic and contextual understandings that help shape this case. At the same time, longstanding relationships held between those co-authors and the community-based Collective members are mediated by past experiences, different social locations and social relations of power. Other co-authors on the article who occupy more of an “outsider” role as external researchers, are also limited by their lack of knowledge of Quechua, lack of direct connection and history within the Puno context, as well as their own social locations and social relations of power that mediate their understanding and analysis of the data. While we recognize these complexities, we argue that extensive reflexive discussion of these issues within our team throughout the process helps us to mitigate some of these realities. This type of research team configuration that combines insider-outsider perspectives allows us to analyze from diverse perspectives an important social moment that would be difficult to otherwise access.

Conclusion

The work of the Collective examined in this case study highlights how the emergency initiative to create Quechua-language PSAs represents another chapter in these activists’ efforts to press for decolonial change and to realize health rights. The right to health is recognized in Peru’s constitution, in its national laws and policies, and by many international human rights treaties. ⁸ While the actions of the Collective are useful, these types of civil society efforts do not remove the state’s duty to meet the health rights of its citizens and communities during public health crises.

The activists in this case study have spent over 25 years struggling with the Peruvian state to promote health justice, including the right to have an intercultural health approach effectively integrated into the state’s public provision of health services. More broadly, the Health Defenders’ efforts are rooted in struggles for recognition of their political and social agency by the health system, especially at the primary level of care. Although they have made important inroads towards being treated as full members of Peruvian society, this case suggests that there is still much to be done.