Participatory health research with migrants: Opportunities, challenges, and way forwards

Abstract Context Migration is one of the most politically pressing issues of the 21st century but migrant health remains an under‐researched area. The International Collaboration for Participatory Health Research (ICPHR) working group on migration developed this position statement to address opportunities and challenges in relation to migrant health. It aims to contribute to a shift from a deficit model that sees migrants as passively affected by policies to their reconceptualization as citizens who are engaged in the co‐creation of solutions. Methods This paper examines the opportunities and challenges posed by the use of PHR with migrants. It draws on a broad literature to provide examples of successful PHR with migrants and highlights critical issues for consideration. Findings Successful initiatives illustrate the value of engaging migrants in the definition of the research agenda, the design and implementation of health interventions, the identification of health‐protective factors and the operationalization and validation of indicators to monitor progress. Within increasingly super diverse contexts, fragmented community landscapes that are not necessarily constructed along ethnicity traits, inadequate structures of representation, local tensions and operational barriers can hamper meaningful PHR with migrants. Conclusion For each research context, it is essential to gauge the ‘optimal’ level and type of participation that is more likely to leverage migrants’ empowerment. The development of Monitoring and Evaluation tools and methodological strategies to manage inter‐stakeholder discrepancies and knowledge translation gaps are steps in this direction. Patient or public contribution This paper draws from contributions of migrant populations and other stakeholders to policymaking.


| INTRODUC TI ON
Migration has become one of the most politically pressing issues of the 21st century. It is a diverse experience, with potential for both positive and negative impacts for individuals and societies as a whole. 1 There is no standardized way to define 'who is a migrant'. 2 For the purpose of this paper, we consider as migrant 'any person who is moving or has moved across an international border or within a State away from his/her habitual place of residence, regardless of the person's legal status, whether the movement is voluntary or involuntary, what the causes for the movement are and what the length of the stay is'. 3 The vast majority of migrants in the world are migrant workers but the numbers of refugees and people displaced by conflict, natural disasters and climate change are at their highest levels, representing 10% of all migrants who move between countries. 4,5 This underscores the importance of addressing the health of migrants as a part of the global health-for-all agenda.
Acknowledging the essential relationship between good health and successful migration, the World Health Organization  6 In addition, the Colombo Statement, which was endorsed by 19 Ministers and government representatives in 2017, affirmed that migrants should be active stakeholders in programme planning and decision making. 7 Still, migrant health remains an under-researched area in global health and has received insufficient attention by health system planners.
Although migrants are sometimes healthier than the host population on arrival, 8,9 there is evidence of health disparities between some migrants and their host populations and a growing awareness that this is linked to the negative impacts of the broader social determinants of health (SDH). 8,12,13 This includes a pattern of exclusion whereby migrants are under-represented in health-care decisionmaking fora for citizens. 14,15 Appropriate methodological approaches are needed to respond to the challenges associated with contemporary migration, mobility and health. 16 Participatory Health Research (PHR) is a research paradigm that has potential to address opportunities and challenges in relation to migrant health. The goal of PHR is 'to maximize the participation of those whose life or work is the subject of the research in all stages of the research process, including the formulation of the research question and aim, the development of a research design, the selection of appropriate methods for data collection and analysis, the implementation of the research, the interpretation of the results, and the dissemination of the findings'. 17 It is guided by ethical principles to reflect its underpinning values including mutual respect, equality and inclusion. 18 In PHR, relationship building and the value of sustained partnerships throughout a project from question identification to result dissemination is of paramount importance. 19 Grounded on the work of Paulo Freire, the ultimate aim of PHR is to catalyse broad societal transformations for a more fair allocation of resources. 20,21 To this end, the entire process of PHR is conceived to leverage joint societal transformation and transcend the scope of the specific objectives of a particular project.
The underlying assumption is that engaging research participants as co-producers of new knowledge fosters their ownership over the research outcomes, which can then serve to articulate and legitimate political claims to address the social determinants of health.

| Define the research agenda
Most of the published academic research that has so far been conducted in the field of migrant health represents the perspectives of high-income destination countries and focuses on migrant-specific diseases with a particular emphasis on communicable diseases and the mental health of refugees. 4 This focus on differences between migrants versus the local populations has led researchers to overlook some of the most common health problems that affect migrants, which are often similar to those affecting the host population. 11,12,22 Concepts of civic responsibility and participation 21,23-25 emphasize migrants' right to shape the research agenda so research efforts address what migrants perceive as priority needs. 26 Decisive endorsement of the principle of participation is reflected in the increasing requirements by research funders and renewed international commitments to meaningfully involve the public and patients in health research, [27][28][29] including migrants. 7 Still, to date, the research priorities in migrant health have been primarily driven by the interests of academics, policymakers and clinicians 10 with infrequent inclusion of migrants in research prioritization processes. 12,15 Setting priorities for research is a complex process, and there is general consensus that there can be no best practice, because of the contextual differences between individual priority setting exercises. 30 36 In addition, certain health interventions 37 may violate individual rights or exacerbate discrimination, for example, when migrants are screened for infectious diseases without adequate referral to treatment when needed. 7,38,39 The provision of sensitive services is thus essential to respond adequately to the diverse needs of increasingly heterogeneous populations. 10,37,40 However, most interventions and policies are based on data derived from the general population and do not respond to the needs of migrants. 41 Where evidence is lacking, PHR can be a good strategy to fill that gap and pave the way to develop more effective interventions and policies.
PHR acknowledges the importance of experiential, practical, emotional and intuitive sources of knowledge. It builds on the insider perspectives and direct knowledge acquired by the people living with the health problem under study, 42 who are considered experts by experience. 17 The multiple ways of knowing that are inherent to PHR can yield the holistic and nuanced understanding that is required to bridge different explanatory models of disease. High-quality care for migrants cannot be addressed by health systems alone. Migrants from low to high-income countries are often marginalized 22 and exposed to social, occupational and economic conditions that have detrimental effects on their health. 7,54,55 The death of migrants during their migration journey is a tragic illustration of the vulnerabilities that affect migrants at different stages of a migration process that often entails unsafe travel, poor nutrition, psychosocial stressors and harsh living and working conditions. 7 A comprehensive response to the needs of migrants requires health systems to engage with other key sectors such as welfare, housing, education and legal protection. 56,57 While the importance of the SDH is widely recognized, 7,11 the role of public policies beyond the health sector continues to be overlooked in migrant health policies. 58 In turn, the SDH agenda has been criticized for adopting a 'colour-blind' approach that presumes that an improvement of socioeconomic conditions will have a homogeneous impact on the health of different ethnic groups. 59  Enabling diverse stakeholders to learn from each other and plan together can yield fresh ideas about the conditions that are necessary to sustain optimum health at each level of the social ecology and the policy initiatives that can produce these conditions. Previous work with ethnic minorities suggests that PHR can effectively promote broader level societal change. In Kansas City, Missouri, for example, a participatory initiative with Black Americans leveraged positive change in schools, churches, the media and the private sector. 63 In London, the participation of migrant women in a breast screening promotion project was reported to be an empowering experience that challenged the view of migrant women as homogeneous and powerless victims. 44

| Identify health-protective factors
Despite the importance of addressing migrants' vulnerabilities using a SDH approach, it can be harmful to assume that the health of migrants is always poor when compared to the host population. 9 The focus on vulnerability can obscure evidence showing migration as a positive experience for many and the fact that many migrants are young, fit and healthy. 7 Still, migrants are often framed as carriers of disease, difficult health-care users, poorly compliant 64 and, ultimately, a burden to health systems and societies at large. 65 Worryingly, the argument that diseases travel in migrant's blood is recurrently used by anti-migrant political leaders to advance their political agenda.

| Power dynamics
Conducting PHR with migrants is not exempt of challenges some of which are common to all PHR in general. Frequently reported barriers in PHR that can impact on PHR with migrants include conflicts amongst participants, often because of issues related to sharing power and the distribution of resources amongst stakeholders. 17 The 'fall back into dichotomies of power' or 'tyranny of participation' whereby the nature of power dynamics within and amongst stakeholder groups is overlooked, and only the narrow spectrum of interests of the most powerful/vocal is considered, is another frequently highlighted challenge of participatory research. 17,77 Other concerns are the modest impact of participatory research in terms of specific actions bringing about societal change, 78 mostly because of the limited control that PHR participants often have over key political decisions. 79 The assumption that participants will have the necessary time available for contributions, the criteria used to economically compensate some contributors but not others, the amount of the economic rewards provided, the mismatch of expectations, accountability issues, different communication styles/ per-

| Definition of 'migrant communities'
Amidst the conceptual and practical difficulty of defining who is a 'migrant', it is also difficult to define 'migrant communities' and their 'representatives'. Social scientists have long contested idealized notions of 'communities'. 85 The assumption that these are constructed primarily around ethnicity is hotly critiqued by ethnicity scholars as inadequately linked to pre-conceived ideas of homogeneity and identity. 86 The over-culturalization of the concept -it is arguedleads to a 'collective image of communion premised on a shared culture' that fails to capture the actual context of real-world settings.
The loose use of the concept as 'black box' 87 is problematic because 'the community becomes too easily an explanation, as opposed to something to be explained'. 87

| Representativity
The absence of formal, physically bounded migrant communities often leads to research partnerships being established with organizations that provide services to migrants, as a proxy for migrants themselves. 89 While there are positive examples, it is prudent to be aware of potential limitations in terms of truly representing migrants' views. This is particularly worrying in contexts where assimilationists policies or cultures prevail and where the fundamental principles underlying PHR are not necessarily endorsed by migrant 'representatives'. A charity worker performing as 'community representative', for example, may not endorse ideas around migrant empowerment and see migrants as passive recipients of charity that should 'adapt' to the host society, as opposed to active contributors to enrich a multi-cultural society.
Even where 'migrant communities' exist in the form of established migrant organizations, we cannot assume that these will always represent the interests of 'migrants' as a whole. Early calls from development scholars warned that non-participatory, 'top-down' assumptions made by international development programmes during the 20th century could be repeated in the health field. 23 As a matter of fact, an individuals' role as 'community representative' may confer him (or her) an increased control over how resources are used/ distributed and serve to reinforce the power of community-based elites. 84,90 As noted by Wright, PHR is not universally nor categorically 'better' than other forms of research. 17 Understanding migrant associations' landscape, their role and functions, and -importantly -their linkages with the broader communities and the State, is crucial to decide the type and level of participation that suits each specific research setting. Key questions to ask since the outset include: what type of community organizations exist?, What type of activities they conduct? and Who participates in them and why?. 23 This should be useful to assess the extent to which particular groups of migrants (eg newcomers, irregulars, asylum seekers, trafficked persons) are represented, and what should be done to ensure their views are also taken into account.

| Local tensions
The assumed existence of 'migrant communities' willing to work together for a common goal is further challenged in increasingly super diverse contexts 91,92 in which different migrant groups may not necessarily share the same interests or maybe share some, but compete for others. The high rate of Brexit voters amongst long established migrant communities in the UK is an illustrative example that challenges the assumption that all migrants share a common goal. 93 Because the more recently arrived migrants often lack structures for effective representation, their views are less likely to be accounted for, and not necessarily fall under the umbrella of 'migrant' interests, as voiced by the most organized groups. 85 The coexistence of shared and competing interests is also prevalent amongst migrants 'belonging' to the same ethnic group, because 'identity and interest are not insoluble', 94 and different sub-groups are likely to hold -at least some -diverging interest and views (eg youth, women).
In contrast with the ideal of cohesive communities, the everyday spaces of neighbourhoods are in fact often characterized by tensions, fragmentation, competition and conflict. Idealized notions of 'community' can thus serve to actually mask and even reinforce wider structural inequities, which is clearly at odds with the principles underlying PHR. It is thus essential to reconceptualize the concept of migrant communities in more fluid terms (eg not necessarily constructed along ethnicity traits), acknowledge the existence of conflict, as well as the potential inadequacy of organized structures of representation that may exist. The likely rise of conflict of interests needs to be expected, assessed, monitored and disclosed.
In this context, it becomes crucial to adopt a balanced approach that eschews the 'idyll of community' critiqued by ethnicity scholars, 95 but also an exclusive focus on conflict and local tensions. This will help to demystify the role played by communities and its representatives while at the same time help PHR investigators to focus on identifying potential niches of shared interests and aspirations around which common efforts can be articulated. 96 Formative research following the principles of PHR can be useful to assess whether and how heterogeneous populations and stakeholders may cooperate successfully, by putting aside differences and work towards a common goal that may actually produce a shared 'sense of community'. Where this is unlikely to be the case, it will be crucial to acknowledge that less or a different kind of participation may -in fact -be the 'optimal' level or type of participation for a particular research context.

| Operational barriers
At programmatic and implementation level, there are commonly reported challenges that need to be addressed. Language barriers frequently lead to the exclusion of migrants who do not speak the host society language(s), who are already amongst the most socially excluded. This has major implications in terms of equity. The use of visual and culturally adaptable Participatory Learning and Action research techniques 12,52 with the collaboration of trained interpreters and peer researchers can be an effective way to overcome these. 50,97 The involvement of peer researchers, however, can lead to blurred personal and project boundaries and requires an ethical and reflective approach. 98 Other ethical issues related to PHR with migrants include negative consequences from taking part in research, as this could put migrant populations at risk of greater marginalization into even greater peril. Ensuring that informed consent procedures truly inform migrants of both the benefits and potential risks of participation becomes essential here. This may be hard to achieve when the invitation to participate comes from organizations that provide social services to prospective research participants. Careful decisions need to be taken over the most adequate compensation and other types of support to be provided to participants, taking into consideration the characteristics and risks of each particular context. A number of resources are available to guide such decisions in accordance with the ethical principles of PHR. 18 Another common challenge is related to other PHR stakeholders' priorities. For example, academics are often committed to traditional (non-PHR) methods and may feel pressured to quickly publish the evidence in high-impact scientific journals. Policymakers or industry stakeholders may be resistant to research findings that challenge their assumptions, values, attitudes, or practices or lack the commitment (or power) to respond to the specific concerns expressed by migrants. 81 Divergence and controversy arise while achieving a compromise to meaningful consensus, which implies negotiation between conflicting interests. Ideally, such a process should help actors to reorient and expand how they define the 'problem' under discussion, considering their multiple perspectives of analysis of the project and different interpretations of its successes/failures. However, in practice, this is not always the case, and inequalities between negotiating actors may end up favouring those who are most powerful. 99,100 The above challenges illustrate the importance of maintaining a high standard of quality and building the empirical evidence about the value of PHR. In this process, it is important to avoid tokenistic approaches where participatory claims are used as a strategy to implement already designed policies rather than to provide spaces for populations to advocate for transformative initiatives. Participatory processes should be described in a transparent and self-critical manner with a comprehensive account of the achievements but also the challenges and limitations faced. 101 Several points should be considered to advance in this direction. First, regular monitoring and evaluation (M&E) exercises within PHR partnerships should gather stakeholders' perspectives of how things are progressing, and when and how adjustments shall be needed. Robust M&E frameworks are urgently needed to guide these processes, with particular attention to power dynamics that may hinder transformative participation dynamics. 100 In a decisive step in this direction, a M&E working group established within the ICPHR is already drawing from various conceptual frameworks and the views of global PHR practitioners to identify relevant domains, indicators and questions to be asked. 102 Second, guidance is needed on how to recruit, engage and create fruitful inter-stakeholder alliances in this particular field of research. A prerequisite to shared decision making is that partnerships and coalitions are established with inter-sectoral stakeholders. 17,103 The many different kinds of potential interactive spaces for participation should be considered, 104 including those established by the State, academics or by migrant populations themselves. In addition, innovative methodological strategies are needed to identify and address conflicting priorities amongst different actors within the broader contexts in which research takes place. 101 The use of arts is an interesting avenue to explore in this direction. 105 Finally, it is important to manage expectations and make it clear at the outset of projects that societal change may not be achieved because of external constraints. While the commitment is towards action rather than guaranteeing action, explicit and proactive steps should be taken to foster the involvement of migrant partners in collaborative knowledge translation activities to reduce the knowledge-to-practice gap.
Bidirectional mentoring between academic and under-represented groups, for example, is a promising approach that has already been successfully applied with ethnic minorities. 106 All these actions shall be helpful to prevent tokenism and co-optation in this field of research.

| CONCLUSION
PHR presents an opportunity to contribute to generating new knowledge about migrants and their health, by bringing together stakeholders who do not usually meet each other in partnerships for research and policymaking. It can potentially contribute to a paradigm shift, from a pathogenic deficit model that sees migrants as passively affected by policies to their reconceptualization as creative, inspiring and actively engaged citizens in search of solutions. 8 This is important to counter the toxic discourse that migrants are a burden to local societies and can help to break down stereotypes by highlighting their positive contribution to social and economic prosperity. 1,5,11 This paper has emphasized the relevance of PHR in the field of migrant health research, providing an alternative approach to address the current challenges in health research and tackle health inequities. PHR is not, however, a panacea, and there are specific challenges in enacting meaningful and impactful projects in this field. The ultimate distinctiveness and added value of PHR rests in its potential to catalyse real-world action for greater social justice.
Supportive policy environments are essential for this potential to be realized. A genuine progress of PHR with migrants calls for meaningful engagement of inter-sectoral and 'whole' governmental policymakers. In this process, it becomes particularly crucial to grasp -for each particular research context -what is the 'optimal' level and type of participation that is more likely to leverage migrants' empowerment so they can better advocate for their voices to be heard, and their rights to be addressed.
At a time where the case for participatory research is gaining momentum, it becomes crucial to encourage and support critical scholarship and reflective, ethical practice, 18 not only in the application of PHR with migrants, but also in better understanding the nuances of the approach, so that it can truly live up to its potential. The development of M&E frameworks and methodological strategies to manage inter-stakeholder discrepancies and knowledge translation gaps are important steps in this direction.

ACK N OWLED G EM ENTS
We acknowledge the contributions of members of the International

CO N FLI C T O F I NTE R E S T
The authors declare no conflict of interest.

DATA AVA I L A B I L I T Y S TAT E M E N T
Data sharing is not applicable to this article as no new data were created nor analysed in this study.