An open debate about the object and purpose of global health knowledge in the context of an interdisciplinary research partnership on HIV/STI prevention priorities in Peru

The Global Fund for AIDS, Tuberculosis and Malaria (GFATM) is the keystone of HIV and STI prevention programs in LMI countries. Epidemiological analyses and cost-effectiveness evaluations of those interventions highlight MSM as the priority population in Peru [28]. However, research also pointed to other key populations at risk such as transgender women (transwomen) [29], female and male sex workers [30, 21], pregnant women [31], female sexual partners of heterosexual/bisexual men [32, 19], and street engaged youth [33]. Similarly to other countries [34‐37] young MSM (YMSM) appear to have greater risks than MSM over 29 years old [20]. In addition, recent Peruvian statistics confirm regional variations of risk for all these populations [21] suggesting that interventions should also address region specific needs among these diverse populations. These considerations from our case study are somewhat in conflict with the emphasis in global health on commonalities, i.e. people’s health is affected by global forces and should be therefore approached using common strategies. While an emphasis on commonalities [as the object of global health] certainly facilitates the quick production of global health research and knowledge, we agree with Rowson and colleagues [4] that this may also pose risks regarding understanding of: a) the social context of health issues, b) the plurality of disciplinary perspectives on defining priority issues and c) the views of Southern populations on what health issues are significant.

In considering the social context of global health, the connection with human rights is central. While the complex policy and legal interpretations of the right to health [38] is beyond the scope of this discussion, it is important to note that Article 25 of the Universal Declaration of Human Rights [39], considers not only medical care but also access to housing, food, clothing, and social services as the right that everyone has for a standard of living adequate for health and well-being. However, the global health emphasis on medical interventions has been to some extent distant from a rights-based approach that emphasizes action to the pre-conditions of health and the underlying social determinants of health. This apparent dissonance has generated critiques on the universal validity of a global health framework [40]. For instance, global health knowledge in mental health has been questioned by psychiatrist Derek Summerfield because “it deflects attention from what millions of people worldwide might cite as the basis of their distress—for example, poverty and lack of rights” [41]. While some of these critiques have come from the medical field [42], others often arise from disciplinary fronts outside medicine [38], but all of these voices call for ‘new frontiers’ on global health politics [43]. These new frontiers are a reminder of Rowson et al.’s [4] call for a plurality of perspectives in global health knowledge. The authors of this paper indeed came from diverse disciplines, economics (ES), psychology (ES, JA), public health (JA), sociology (CL) and social work (ES, CL) and are combining their different epistemological frameworks to develop the current research project. For example, a social work strengths-based, anti-oppressive practice framework is congruent with a rights-based approach and emphasizes resilience as well as resistance [44]. This may seem inconsistent with the dominant framework of risk and vulnerability in health promotion, but combined they may safeguard the necessary inclusion of local participation in defining health problems and solutions and supporting the development of equitable partnerships where knowledge is co-created by knowledge users and researchers, in this case, by Peruvian youth and local and international researchers. We agree with Ouma and Dimaras [45] that to build equitable and mutually beneficial research relationships the views of local partners are highly important no matter which approach is taken. The inclusion of local youth, local researchers and local agencies as knowledge producers in our planned project reflects an attempt to transcend the typical North–south direction of global health knowledge and endorse instead a truly reciprocal, bi-directional flow. Our team itself, comprised of diasporic researchers from the global South living and working in the global North, also challenges the binary of global North vs. global South and highlights the intersectional and often complex, transnational identities of global health researchers.

The purpose of global health research is contested. While some believe a researcher’s role is transactional and should benefit participants and avoid exploitation, others extend the scope of researchers engaged in global health to challenge conditions of injustice and oppression and to promote human rights [46, 47, 3, 48]. Lavery et al. [3] propose a ‘relief of oppression’ framework that promotes freedoms, including social, economic and political opportunities. They argue that addressing injustice “is relevant to background conditions of injustice because it is precisely those conditions that so often give rise to the health and social circumstances that interest observational researchers working in global public health” [3]. This position implicates researchers from high income countries (HIC), or the global North, in addressing inequities that are at least in part shaped by inequitable international trade policies and laws and a history of colonization [3, 48]. In contrast, Rothman et al. [15] argue that global health objectives should be ideologically neutral in order to avoid addressing politics. This approach points to the contextually varying definition of equity and norms regarding stratification across societies, suggesting that it is practically impossible to have a universal definition of equity [15]. While Standing et al. [49] reinforces the importance of grounding all discussions of human rights in local understandings of this concept, they also highlight that purposes of rights-based global health work include conceptual analyses, program and policy approaches, and advocacy for specific populations (e.g. people living with HIV).

Where HIV and STI are the foci, the majority of social and public health researchers concur that social and structural inequity shapes the vulnerability to infection among the most marginalized groups across all societies: SGM, youth, sex workers and prisoners [50, 6, 51]. This suggests that the ‘relief of oppression’ framework may be the most relevant for defining the purpose and guiding international HIV research projects [3]. For example, the ‘relief of oppression’ approach is particularly salient to addressing the HIV and STI prevention needs among SGM youth in Peru. With its focus on promoting freedoms, this framework has implications for research to promote a) political rights, including legal protection from discrimination and representation; b) social opportunities, such as access to social support; and c) access to economic opportunities [3]. These are all key to HIV prevention for SGM youth in Peru, and elsewhere [21, 50, 51]—and for health and human rights of SGM persons more generally [16].

There is a need for greater understanding about the significance and meaning of rights and equity in persons’ lives across diverse contexts [49]. Standing et al. [47] propose a research agenda that explores a) social conceptualizations of sexuality, rights and sexual and reproductive health (SRH), b) how groups, such as SGM persons, negotiate rights and wellbeing and c) how we can share lessons learned from diverse global contexts. In the Peruvian context this may translate into an exploration of socio-cultural norms regarding sexuality, rights, and HIV/STI in our 2 research areas—Lima and Ayacucho. It could also inform research that examines understandings of rights, stigma, resilience and HIV/STI among LGBT youth in Lima and Ayacucho, as well as initiatives for knowledge translation within and between countries. Kippax et al. [50] underscore the need to explore the intersection of socio-political and bio-medical perspectives on HIV prevention. From this angle the purpose of knowledge could be to examine multidisciplinary understandings of issues such as HIV prevention and socio-political mobilization [51]. These perspectives, while not exhaustive of the purpose and direction our proposed research could take, help to unpack our framework and approach to the role of researchers and provide a clear roadmap of the multi-directionality our research could take—from exploring the applicability of the ‘relief of oppression approach’, to exploring the meaning of rights and equity in Lima and Ayacucho, and/or applying a multi-disciplinary approach to informing HIV prevention.

HIV and STI prevention research crosses disciplinary and sectorial boundaries; such generation of knowledge of complex systems requires the participation of people with different academic backgrounds and interests, different methodologies and theoretical frameworks. Such diversity presents a challenge for the formation of health collaboratories—technology-supported research networks involving different stakeholders, such as researchers, healthcare providers, and community actors [52]. Although guidelines and experiences exist for ensuring the development of successful collaboratories [53, 54] uniting all stakeholders in a general framework that takes into account each subspecialty constitutive of a collaboratory is a difficult task in and of itself. However, the use of health information technologies is an example of the diverse types of knowledge that can aid in the deployment and evaluation of such collaborative networks in global health projects by implementing innovative communication technologies and methodologies that promote coordination between health care providers/researchers and the target populations.

Consumer health informatics (CHI) is an emerging field of study that lies at the intersection between the social and behavioral sciences and information technology as applied to personal health issues [55]. However, unlike the most established areas of health informatics [56], which focus on hospital-based healthcare, CHI possesses several features that distinguish the field. First, its central focus is health information users, that is, patients and the lay public. Second, it cuts across the levels of individual and population health. Third, because of its focus on the layperson, one of its major concerns is with prevention of illness by fostering lifestyle changes and early screening behaviors. In this sense, CHI can serve to investigate and implement methods of empowering laypersons to become informed and skillful users of health information.

However, for populations that lack basic resources and are disempowered in society, such as street youth, SGM, and sex workers in LMI countries, adopting healthy lifestyle changes is particularly challenging. It may also reflect neoliberal ideologies that place the impetus for change on the individual vs. society. How can CHI help marginalized populations globally in becoming more informed and skillful users of health information and services? Apart from increasing accessibility through communication devices (e.g. cellular phones), CHI can also provide personalized information and reminders for health users, which they can use to reduce the distance between healthcare providers and themselves. CHI can also contribute to empowering patients by means of decision aids that help marginalized individuals to challenge the stereotypes that may be barriers to health care. For instance, CHI technologies can provide researchers and healthcare workers with ways of gathering specific patient information about users in a very secure and anonymous way, which allows the latter to share information without the threat of stigmatization. Furthermore, relevant to our project at hand is the use of peer-to-peer (P2P) technologies. These are based on utilizing a network of users for storing and distributing information, rather than a central repository or database; this can inform the infrastructure to develop and maintain social networks of people with similar lifestyles, interests, and social identities including sexual orientation and gender identity. In this regard, one potential implementation could be the development of secure user portals for SGM youth in Peru who can access such websites for accessing personal health information or as venues for interacting with healthcare providers and community activists.

However, although the CHI field has been heralded as an important contributor to the solution of many of the problems facing healthcare and medicine today, including HIV and STI prevention, CHI interventions have to meet several challenges when applied to complex “real life” situations, from access to health services [57] to the use of screening aids for basic health concerns [58]. One of the major challenges is the variability in the populations that are the target of CHI interventions in global health. For instance, in the context of our project in Peru, information has to be not only timely, but also tailored to the characteristics of SGM youth, especially those groups who need such interventions the most. It is encouraging that previous research in Peru indicated favorable attitudes among HIV positive groups about using the Internet, cell phones and Personal Digital Assistants for HIV health promotion interventions, pointing in particular to cell phones as feasible and culturally appropriate tools in resource-poor settings [30]. In short, problems regarding literacy, accessibility, usability of the electronic tools, and comprehension of the information provided by health care professionals are some of the issues to which CHI could contribute real solutions by devising different portals for SGM youth depending on their social environment (e.g., urban–rural), age (adolescents vs. adults), and other factors. For instance, studies have shown that by using methods of analysis of health information it is possible to tailor such information to specific populations to increase readability and comprehensibility [59]. For these strategies to be successful information should be adapted to the particular characteristics of the youth who are the target of the research and interventions, such as the appropriate literacy levels and degrees of comprehension, while matching the information usability to their learning styles. An example of this is provided by studies that improve people appropriate literacy levels and manipulate the cognitive load [60] necessary for ease of processing, such as improvements in coherence of information, propositional density, and use of illustrations [61]. In turn, by including users as generators of knowledge, we can start developing more systematic and potentially more sustainable research endeavors. CHI is merely one example of the bridging of social sciences and biomedical perspectives and the benefits that this interdisciplinary confluence can offer to HIV research [48] and ultimately to the study of globalization and health. The tensions of bridging individual focused interventions with social and structural level interventions for HIV and STI prevention with key populations has been articulated but is important to reiterate as there is increasing attention to biomedical and new prevention technologies [62‐64].