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Resource guide for community engagement and involvement in global health research

Contents

Community engagement and involvement: people, process and power

Across the breadth of global health research now funded by the NIHR, there is a common cause that binds diverse projects together. The shared aim of the global health research portfolio is to leverage the research capacity of UK and LMIC based institutions to directly impact on the health and well-being of vulnerable and marginalised populations within Overseas Development Assistance eligible countries.

In line with the call to “Leave No One Behind” within the Sustainable Development Goals, this funding mandates that all projects include Community Engagement and Involvement (CEI) as a core component of the research strategy, planning, implementation and evaluation process.

While the social determinants and other influencing factors of these health issues will vary widely according to cultural and geographic contexts, all CEI work will require a deeper understanding of the intersecting experiences of marginalisation and exclusion of those most affected if they are to have a ‘transformative impact’ (1).

The first thing to understand about ‘community engagement’ and the broad goal of ‘involvement’ in global health research is that this is not a new way of thinking (2-6).

The meanings of community engagement, and the assumed potential of the approach to improve the health and well-being of poor and marginalised populations, has been at the heart of debates over public health planning, health systems development, and the tensions between horizontal versus vertical approaches to international public health interventions from the late 1950s.

What this means for those seeking to develop ‘innovative’ community engagement and involvement strategies within interdisciplinary health intervention research projects in 2019, is that there is a substantial pool of already existing knowledge on what has worked, and what hasn’t (7-10).

In the decades leading up to the 1978 Alma Ata Declaration of “Health for all by 2000” (11), public health professionals, not-for-profit, private health providers and governments in both the North and South tested out new methods of community engagement.

Building on these innovations in community-centred health care, which ranged from the “barefoot doctors” in China, to the work of the Christian Medical Commission, to social medicine movements in Latin America, the Alma Ata Declaration enshrined community participation as a guiding principle of future primary health care efforts.

While vertical biomedical interventions have nonetheless dominated the practice of global health since the late 1980s (2), there has been in recent years a renewed push for increased power-sharing, upwards accountability, and a more reflexive and deliberative way of working towards ‘health for all’ (12-19).

This movement towards greater horizontality in planning and decision-making within international public health efforts is – in part - a response to the growing awareness of health inequities and social determinants of health.

Community engagement is an umbrella term. It is used to describe a wide variety of approaches that in practice vary from tokenistic forms of inclusion in health research decision-making, to de-centred participatory planning, knowledge co-production and resource sharing (8-9).

Doing community engagement can be messy. There is no recipe book to follow, or model that can be brought to scale. It does not de-facto generate equitable health outcomes or shifts in structural inequalities (7). However, if it is done with an openness towards new ways of relating across differing positions of power, and new mechanisms of knowledge production within the otherwise hierarchical world of global health research, it has the potential to be a positive force for change.

People-centred methods: who is 'the community', what do they need, and how do you get started?

One of the most challenging aspects of community engagement is to identify ‘the community’. A common error in public health research and global health project implementation has often been to identify ‘the community’ in purely geographic or place-based terms (e.g. health clinic or hospital catchment areas, rural village or urban municipality boundary lines). However, geographic boundaries and social forms of belonging and identity-making do not necessarily overlap. These past decades of community engagement work have generated substantial knowledge on just how complex, dynamic, and heterogeneous social groupings can be (7, 14, 20-21).

Furthermore, we know a lot more about how participatory methods necessarily create tensions in the ‘inbetween spaces’ of differently situated actors with differing levels of power (22, see also this blog post), including the researchers themselves. The act of opening up the decision-making processes of health research to include individuals and groups who might have different, and potentially competing, ideas about what their communities need is just one facet of the negotiations that will necessarily emerge from involving communities in more meaningful ways.

In light of these complexities, we recommend using an ‘empowerment framework’ and ‘learning by doing’ approach. What this means in practice is that instead of a target-oriented, top-down approach to getting specific community members to engage as ‘beneficiaries of programs with the objective of improving health services delivery’ you ‘mobilize community members to participate in decision-making, planning, implementation, and evaluation of programs’ with the aim of empowering marginalised groups to have greater control over the decisions that most affect their lives (15 p.25, see also 16-19).

‘Learning by doing’ requires building in reflexivity and flexibility into the design of project activities, therefore creating the necessary space in the timeframe of the project to step back and reflect together with community members about what is working, what isn’t, and how to address shared challenges.

A good place to get started to better understand what these approaches look like in practice are both EQUINET’s “Participatory Action Research in Health Systems: A Methods Reader” handbook, and ActionAid’s “Transforming Power: Participatory Methodologies Forum” report. Both offer helpful guidance and a range of potential tools and methods that can be used from inception period through to the evaluation and coproduction of research findings.

In addition to these published materials, we suggest learning more about the “ethics framework for community engagement in global health research” currently being developed by Dr. Bridget Pratt at the University of Melbourne. Thinking through ethics concerns in an iterative, reflexive way, together with those individuals and groups being directly targeted by health research, is one concrete way
to encourage power-sharing.

Beyond these starting points, there exists a much broader range of ‘communities of practice’ and published reflections on participatory and community engagement methods in health and development (23-26).

Useful resources

Here are a few links we recommend for inspiration, ideas, resources and support.

  • Participatory Methods – The IDS hosted website for ‘people working together around the world to generate ideas and action for social change’
  • COPASAH – Community of Practitioners on Accountability and Social Action in Health
  • Participedia – A global community sharing knowledge and stories about public participation and democratic innovations
  • Participate – The IDS hosted website for the Participate project which focuses on mobilising ‘knowledge from the margins for the SDGs’
  • Transformative storytelling for social change – this site includes handbooks, case studies and supportive resources to use transformative storytelling within the context of a community-engaged research practice
  • MESH – an online network for people working in community engagement in global health

Sharing power when setting research agendas: developing an ethical toolkit

Extracted from “Giving Communities a Voice”, by Bridget Pratt, University of Melbourne, bridget.pratt@unimelb.edu.au

What’s needed to give marginalised communities a voice in agenda-setting for health research projects? Recent research shows several key considerations apply before, during and after agenda-setting.

Before setting an agenda, several ethical considerations apply. For example, researchers and their partners need to assess whether the foundations for shared decision-making exist or can be built with community members. Building these foundations can take time, and may not align well with current short-term funding models. During agenda-setting, researchers and their partners need to employ strategies to share power with disadvantaged and marginalised communities in areas like leadership, space, level of participation and facilitation amongst others.

Sharing power means that locally-based researchers, community organisations and key informants are among those initiating and leading agenda-setting. It’s important to undertake agenda-setting in physical locations that promote the presence and voice of marginalised groups. As one community engagement research affirmed, the choice of location can radically influence the outcome of engagement efforts.

If you hold (a meeting) in the health department building, there’s a particular set of behaviours and languages that are associated with that building, and people who dominate those behaviours and languages will dominate the meeting…[when] we did a meeting in thetraditional meeting house and we got people from the ministry and the World Bank to go there…it completely changed the dynamic.

To encourage community members’ participation, sharing power means involving marginalised groups as decisionmakers, not just as part of a consultation process. So researchers, partners, and community members deliberate together, integrating their knowledge to generate the final research objectives. By way of contrast, consultation is characterised by community members being invited to give their input to agenda-setting, but having no assurance it will be used. To facilitate deliberations, a certain approach is required to ensure the least powerful voices get as much opportunity to be heard as the most powerful. Explained one public health researcher:

You can set people up to be even further disenfranchised in that sort of process where you assume they’ve been engaged in the design of something, but in fact they’ve just been silenced by internal power dynamics within a group. 

After agenda-setting, it is important to demonstrate respect and accountability to marginalised groups by feeding back research topics and goals for their comment, and by acting on the final research priorities. The goal of inclusive and meaningful citizen engagement in priority-setting demands an iterative and deliberative approach tounderstanding, and therefore mitigating, unequal power relationships in global health research.  The attentiveness to power and inclusion is key to moving beyond shallow, or tokenistic forms of community engagement in global health research.

Based on this research, an ethical toolkit is being developed to assist researchers and their partners (community organisations, policymakers, health care providers) to design priority-setting processes where power is shared with communities. For the most up-to-date version of the toolkit please contact Bridget directly. The current version consists of three worksheets to be completed by researchers and their partners in collaboration, and a companion document.

Deliberative community engagement in targeted health research: what does it look like and why does it matter?

The global health research portfolio of the NIHR calls for interdisciplinary research consortia to tackle health issues for which there is a potential for ‘transformative’ outcomes. With thematic areas of work  that range from health policy and systems-focussed interventions, to Neglected Tropical Diseases (NTDs)  and Antimicrobial Resistance among others, a commitment to community engagement and involvement is  a prerequisite to achieving measureable impacts.  

As one example of this commitment, the NIHR Research and Innovation for Global Health Transformation (RIGHT) programme foregrounds a CEI approach in its portfolio which includes research on severely  stigmatising skin disease, epilepsy and infection-related cancers. It is clear from the paucity of existing  literature on community engagement in LMIC specific research on these specific health issues that there  are gaps in knowledge and practice to be filled (27,28). For the broader category of mental health (NIHR  RIGHT call 2) there is more experience to build on, though much of it derives from models of community  engagement first established in High Income Country (HIC) settings (for exception, see 29–31). Across the  NIHR’s Global Health Research portfolio it is clear that standardised practices of community engagement  borrowed from HIC contexts will not be sufficient. 

To effectively tackle health issues shaped by culturally, geographically and health-systems specific  experiences of stigma, marginalisation and exclusion, contextually-grounded approaches will be needed.  To generate a CEI approach for these ‘stickier’ health concerns, it will necessarily be more challenging to  find ways to integrate ‘knowledge from the margins’. 

In Cyril, Smith, Possamai-Inesedy and Renzaho’s systematic review on the role of community engagement  (CE) in improving the health of marginalised populations, they found the greatest impact where these  approaches ‘…included incorporating the voice and agency of indigenous and ethnic communities in the  research protocol, real power-sharing, bidirectional learning, and needs assessment’ (7, p.7). 

By contrast, those that did ‘not improve health behaviours were affected by lack of community involvement  in formative research and inadequate needs assessment’ (Op. Cit). Key to the successful examples identified  in this systematic review, and those reported elsewhere, is the prioritisation of a deliberative approach. To  be ‘deliberative’ requires repeated efforts to check, test, and readjust the assumptions that the research  team has brought with them into their project design against the lived realities of those people at whom  their research is meant to benefit.  

This might mean multiple rounds of community consultation that are built into the decision-making  process of the research programme, leaving open the potential of changing tack or adjusting the research  approach in accordance with what emerges from the consultation process. This could include consultations  with community members subdivided according to the particular forms of marginalisation and exclusion  relevant to the health issue (rather than lumping people associated with one geographic space all together).  Whatever the degree of ‘robustness’ of the CEI approach that is taken, it will require an investment of time  and project resources. Perhaps most importantly, it requires a human resources investment. Community  engagement works best if within the interdisciplinary team there are sufficient team members that have  the necessary ‘soft skills’ to do relationship-building work and to navigate complex relationships of power.  One good example of the deliberative approach in action has been the work of the Kenya Medical Research  Institute Wellcome Trust Research Programme centred on the Kilifi County Hospital and the surrounding  communities of 280,000 residents (32,33). This research group embedded multiple cycles of community  consultation and adaptation in their research, which created multiple opportunities for the project to  adapt in response to the needs, values and demands of community members.

Deliberative approaches to community engagement: A case study from an international collaborative health  research programme in Kenya 

By Vicki Marsh, Noni Mumba, Salim Mwalukore, Sassy Molyneux and Dorcas Kamuya 

At the Kenya Medical Research Institute (KEMRI) Wellcome Trust Research Programme on the Kenyan Coast,  many studies focus on a geographically defined ‘community’ of around 280,000 people living around the County  Hospital where the programme is based. Over time a multifaceted platform of engagement activities has been  developed, recognising the complex, layered and dynamic relations and structures within this population.  

Deliberative engagement approaches are part of the platform, specifically developed to bring diverse community  voices into ethical and practical policy-related debates about whether and how more complex, often novel and  sometimes sensitive research or research-related activities should be planned and implemented in this setting.  

To date, deliberative engagement methods have centred on a range of research-related policies and issues,  including sharing incidental genetic findings; study benefit sharing; research data sharing and governance; the  use of routine clinical data in research; involving children and young people in research; and research and clinical  sample bio banking at the centre.  

In developing deliberative approaches, we draw pragmatically on three core literatures and fields of practice,  including practical applications of deliberative democracy in the global north, the related literature on deliberative  ethics and the methodological grounding of constructivist and critical forms of social science. Core lessons from  our experience concern processes of sampling, engagement and analysis.  

We use purposive sampling approaches to include diverse voices, relevant to the issue at hand and sensitive  to marginalized positions. In relation to engagement processes, carefully developed (piloted) approaches that  build mutual respect, manage group dynamics and ensure that all views and underlying reasoning are heard are  foundational.  

In particular, we build tailored participatory approaches that draw on co-learning to promote wider understanding  of core issues, and ensure reflexivity around researchers’ own ethical values. For example, during the bio banking  engagement, it was important to show participants the freezers where biobank samples are stored and the  measures used to anonymize these.  

In discussing study benefits, we avoided ‘ring fencing’ discussions by introducing terms such as ‘undue inducement’  and ‘exploitation’ from the research ethics literature, but explored and then drew on participants’ views on any  limits that should be placed around levels of study benefits.  

For more complex and novel areas, it has been critical to allow for repeated discussions to give time to explore and  reflect on new areas introduced; we have worked with a series of small group discussions and larger workshops  followed by small group discussions.  

During analysis, we’ve used summary analysis charts to capture forms of individual reasoning, including changes  over time, in and across groups, supplemented by traditional software supported inductive framework analysis to  draw out meaning from the data.  

Analysis and interpretation of the data is a team process, building normative arguments by drawing on the wider  literature, including relevant areas of social science and bioethics. There are many challenges in this process.  Some are practical, such as finding the skills to develop and run these activities, blending skills in ethical analysis  and qualitative and participatory research approaches; all of which are time consuming and require a funding  commitment.  

There are also important challenges in bringing the outputs of engagement to bear on policy in practice, given the  complexity of policy development. However, our experience has been that the careful mapping of diverse views  and values across a community in relation to well explored ethical issues provide a strong basis for a normative  analysis that has the depth and flexibility to be carried forward throughout a policy development process.

Understanding power and accountability on global health interventions

This reader in community engagement concludes with some thoughts on power and accountability in  global health interventions. The emphasis given by the NIHR to a community engagement and involvement  approach is absolutely key to achieving the “Leave No One Behind” agenda. We know that in spite of over  six decades of concentrated investment in global health, the seemingly intractable problem of health  inequities remains unsolved (34). As health researchers, it is a moral imperative to seek meaningful  engagement with the very people whose lives this new knowledge seeks to transform. 

With both the Sustainable Development Goals ‘Leave No One Behind’ agenda, and the World Health  Organization’s revamped commitment to a Universal Health Coverage and so-called Alma Ata 2.0 agenda,  it is crucial that those involved in global health research recognise and grapple with the unequal levels of  power and the dynamics of exclusion that have for so long defined the field.  

The emphasis given by the NIHR to a community engagement and involvement approach is an important  priority, alongside many other allies working in the broad field of global health, towards more equitable  and ethical practices of research. The gold standard should be a self-reflexive way of working. If the global  health research community does not hold itself accountable to the ‘target groups’ it seeks to understand,  or look for ways to creatively leverage collective influence to push for change at higher levels of power,  then this work risks compounding the very health inequities that are the subject of investigation.

How to make a diagnosis of marginalisation in the health sector

Extracted from “How to advocate for an ‘Leave no one behind’ approach in the health sector” by Erica Nelson, on behalf  of the Swiss Agency for Development and Cooperation 

By definition, to be marginalised is both a cause and an effect of poor health; that is, being in a state of poor  health (broadly defined) can lead to social exclusion, economic hardship and political marginalisation; and social  exclusion, economic hardship and political marginalisation are contributing factors of ill health. Health systems  are highly politicised social systems.  

Across all levels and activities within a health system, social rules and norms contribute to different levels of  exposure to disease, or vulnerability to ill-health, and to different levels of access to preventive, curative and  rehabilitative care.  

Intersecting patterns of social difference - e.g. economic status, geographic location, gender, religion, ethnicity,  race, disability, age, health status, educational status – play a substantial role in determining both individual and  group means to achieve good health, to prevent ill-health, and to treat ill-health. 

Disaggregated data collection 

The first step towards a better understanding of the scope and nature of marginalisation and exclusion within the  health sector is to begin to build in disaggregated data collection at the planning, implementation and evaluation  stages of a given health research intervention.  

Disaggregated health data – by sex, age, socio-economic status, ethnicity, education status among other  possibilities – can help to identify where patterns of social difference contribute to poor health outcomes.  

Subsequently, this data can help to ensure that community engagement and involvement activities are reaching  out to, including, and better understanding those who are most marginalised and excluded.  

The World Health Organisation is building up a health inequalities monitoring database on a country-by-country  basis, which can allow for a broad brushstrokes understanding of patterns of marginalisation in health systems.  

However, this data is not of sufficient detail when it comes to intersecting patterns of marginalisation and  exclusion at sub-national, regional or local level.  

It will not be feasible to address the whole range of possible social identifiers of difference, but depending on  the nature of the intervention a good place to start is to pick at least two or three categories of marginalisation  relevant to the project design and track change over time across these categories.

Gender and intersectionality analysis  

The starting point of a gender and intersectionality analysis is to understand that health systems – that is the  nationally-specific contexts in which the NIHR’s Global Health Research will be carried out - are not ‘gender  neutral’. 

Health systems are defined by unequal and asymetrical power relationships, of which gender is one important  category of difference.  

Gender analysis, and the related endeavour of intersectionality analysis (which accounts for intersecting patterns  of social difference such as race/gender/education status), is recommended as an integral part of health research  interventions at all stages of the process (36).  

With regards to CEI, this means critically examining all aspects of a proposed strategy to ensure that marginalised  voices are heard, potentially within the context of separate and safe spaces. 

Stakeholder analysis and accountability mapping  

Accountability is increasingly being instrumentalised as an intervention to improve health outcomes. To understand  how relationships of power can constrain or open up pathways to change in global health, it is necessary to map  out the key stakeholders of a given health intervention and the relationships of accountability that structure their  interactions (37).  

For example, one common approach to improving health outcomes at the local level is the use of a “community  scorecard” to identify, track and remedy issues of poor or inadequate service provision. For a better understanding  of what one approach to a community-scorecard process might look like, see the “Enabling Community Action for  Maternal Health” photo story by Vaishali Zararia, Renu Khanna and Sophie Marsden. This photo story describes  a collaborative project between three non-governmental organisations (SAHAJ, ANANDI, and KSSS) in Gujarat,  India, that worked together to promote community action and social accountability for improved maternal health  services. 

This approach runs the risk of putting increased pressure on the least powerful actors (e.g. community health  workers) who cannot control the resources they are allocated, or the support they are given to perform their  roles. A stakeholder and accountability mapping approach, using the Brinkerhoff matrix as a starting point (38),  can help to begin to identify how relationships of power play out at multiple levels of health policy making, health resources allocation, and within public health governance structures.

While the NIHR global health research funds are not necessarily targeted at accountability-specific interventions (e.g. research that aims to improve public health governance and the responsiveness of health duty-bearers) it is worthwhile to consider what community engagement and involvement work is being done by front-line health rights activists.

The more overtly politicised and political work done by these activists is useful for what it can tell us about the relationships of power that structure and shape how marginalised groups interact with public health services and health systems, and how their voices (and by extension, their needs) are easily silenced (34-35,37).

Health Accountability and Adaptive Action Cycles:  Learning from the Centro de Estudios para Equidad y Gobernanzo  en Sistemas de Salud (CEGSS)

One great example of an ‘Adaption Action Cycles’ approach to community engagement in public health is that  done by the Centre for Health Systems Equity and Governance (CEGSS) based in Guatemala.  

CEGSS uses ‘action-reflection-action’ cycles to allow them to continuously check-in and reassess how their  strategic approach to improving indigenous health equity is working, and perhaps more importantly, how to  respond to the push-back from health authorities or conflicts that their articulation of health rights can generate.  

In contrast to the ways in which SMS technology is more commonly used to collect data in geographically dispersed  settings, the CEGSS teams use teams of trained local ‘health defenders’ who listen and collect complaints related  to poor health services, denial of treatment and verbal abuse (all common issues for indigenous populations in  Guatemala) and then logs this according to a detailed classificatory scheme via SMS. In this way, the CEGSS team  can geo-reference complaints and build a more detailed picture of where health rights are at greatest risk.  

Once there is sufficient data to collate and then present to health authorities, they move their demands higher  up the decision-making hierarchy.  

Based on the response from health authorities, they return to the communities involved and reflect on which  actions are producing the desired results (e.g. improved health services) and whether they need to seek out new  alliances, different points of leverage, or collect alternative forms of data.  

As they write, ‘from our initial technical approach to accountability through supporting implementation of a legal  mandate for participatory monitoring and planning of health services, CEGSS’ support has evolved to focus on  adaptive cycles of accountability action.  

Through close engagement with the indigenous citizens, communities, and grass roots organisations on the front  lines, we have observed that it is not the information generated by monitoring that influences accountability, but  the process through which citizens gain and confront power.  

With a central focus on activating citizens’ latent power and their power as a group, reading the response in the  political context and adjusting strategies accordingly guides adaptive cycles of gathering evidence and advocating  with public officials.’

The community engagement links, resources, references and learning offered here are an attempt to give  research teams and funding applicants a starting point for thinking critically about the assumptions and  expectations they might carry with them as they embark on what might be a new way of working, or a  well-honed way of working that is being tested in a new geographic context.  

The good news is that beyond something as static as this piece of paper, there are lots of already existing  networks that applicants can tap into as they begin their work. Do not hesitate to reach out – there is  much to be learned.

Author

Erica Nelson, PhD
The Institute of Development Studies

Dr Erica Nelson is an ethnographer and historian with expertise in health systems, health policy processes, and community health approaches both past and present. Her current research focuses on the public health planning and community-based health systems development in the Latin America region (in affiliation with the London School of Hygiene and Tropical Medicine), in addition to contributing to
social accountability and health systems research at the Institute of Development Studies.

She was previously a post-doctoral fellow in medical anthropology at the University of Amsterdam’s Institute for Social Science Research. In this capacity she led the participatory ethnographic research component of a multi-country adolescent sexual and reproductive health project in Bolivia, Ecuador and Nicaragua. She completed her PhD in Latin American History (minor Anthropology) from the
University of Wisconsin-Madison in 2008, and has since worked in both applied and academic settings in global health. She teaches on the Brighton Sussex Medical School Global Health MSc course and on LSHTM’s Distance Learning MSc in Public Health.

Glossary

Vertical biomedical interventions
A term used to refer to the tendency in global health, and formerly international public health, to intervene according to biomedically-specific research objectives, government mandates or the agendas of private philanthropic funding bodies (e.g. to combat HIV/AIDS, Malaria or Tuberculosis, versus spending on public health infrastructure or primary health care services that meet a range of public health needs) (2).

References

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More information

For more information please contact NIHR Central Commissioning Facility’s Patient and Public Involvement and Engagement Team:

Email: ccfppi@nihr.ac.uk

Telephone: +44 (0)20 8843 8041

This resource guide was published in September 2019.

This work is licensed under a Creative Commons Attribution 4.0 International License.