Equitable Working with Community Expertise
November 2021
INTRODUCTION
Standing Rock Water Protectors, MAS movement in Bolivia, Sami Peoples in Scandinavia, “cancer corridor”, Memphis Sanitation Strike, Bean v Southwestern Waste Management Corp. and the Formation of NECAG, the Sahel communities restoring the landscape, these are all communities that have led society towards environmental/health justice, changed policy, made us more aware of the link between place and health. They have held industrial polluters to account, and created solutions for environmental degradation. Therefore, we must acknowledge that communities hold specialist and crucial expertise and they are best poised to steward towards healing futures.
Our jobs as scientists and those who work with data at the intersection of environment and health is to listen and learn to equitably collaborate with communities. In this report, we will look at equitable engagement with community expertise and why it is essential to move towards equitable health solutions. We will define ‘equitable engagement’; reframe the relationship between community and science; and provide a ‘How To’ manual that includes seven principles for equitable engagement with community expertise.
Each and every individual’s lived experience is valid. Taking the lived experience and expertise of all the individuals of a community allows for the identification of patterns but also adds important nuances to our understanding of a given phenomenon. The ‘outsider’ cannot come, observe, and leave, to then claim they have an oversight of the situation and an understanding of the problem. This is not an equitable approach to engaging with communities and community expertise.
DEFINING COMMUNITY & COMMUNITY EXPERTISE
A community is a group of people who have factors in common that socially, mentally, culturally, and spiritually bind them, such as living in the same area, or, among other things, their interests, work, gender, sexual identity, nationality, customs, language, activities, events, or ethnicity (source/source). This means that:
factors shared/in common can define a community;
the size of a community can range from a handful of people to millions; and
every individual is part of several communities.
It is crucial to remember that, in any given context, ‘the community’ is not a static, homogenous entity. Rather, ‘the community’ is a diverse group of individuals and sub-communities who -- although they share factors which make them ‘the community’ -- they can also have different histories, cultures, experiences, priorities, interests, and expectations. This is crucial to keep in mind while engaging with a community a) to be able to understand the full extent of a given phenomenon; b) to give everyone a voice in the process; and c) to find the most equitable solution for a given problem.
In the context of urban health, a community may be a group of people living in the same area who are affected by a health hazard, such as air pollution, water pollution, noise pollution, or light pollution. Due to their exposure to this hazard, they can begin to experience similar symptoms, such as headaches, nausea, dizziness, disturbed sleep, and poor mental health (anxiety/depression). Of course, every individual feels different symptoms in different intensities, but they are all affected by the same health hazard and are sharing the same experience. This is what makes them a community. Additionally, every individual in the community has daily in real-time lived experience of the phenomena and therefore holds a deep lived expertise. They know what it means to live in the area and how the hazard affects their health and well-being; they have knowledge, understanding, and insight. Taken together the lived expertise of all the individuals of a given community is what we define as community expertise -- that great, invaluable, communal knowledge, understanding, and insight.
Each and every individual’s lived experience is valid. Taking the lived experience and expertise of all the individuals of a community allows for the identification of patterns but also adds important nuances to our understanding of a given phenomenon. The ‘outsider’ cannot come, observe, and leave, to then claim they have an oversight of the situation and an understanding of the problem. This is not an equitable approach to engaging with communities and community expertise.
DEFINING ENGAGEMENT & EQUITABLE ENGAGEMENT
Community engagement can mean both ‘engaging the community in something’ and ‘engaging with the community’. This stems from the definition of the verb ‘to engage’ which can mean both ‘to interest someone in something and keep them thinking about it’ and ‘to become involved, or have contact, with someone or something’ (source/source). Although they are related, the two definitions set a different focus.
While the first definition (‘engaging the community in something’) suggests that the community needs to be engaged by the outsider, the second definition (‘engaging with the community’) suggests that the outsider needs to engage with the community. It is probably true that in every community engagement process, both definitions apply. However, in the community engagement literature, the first definition seems to outweigh the second definition. The typical question is: ‘How can we, the outsiders, engage the community in our project?’ We at Centric argue that the focus of this question needs to be shifted.
Additionally, this contextualisation puts us in “relation” with the community rather than in “contact”. As time goes one that relationship strengthens, and the initial collaboration becomes one ecosystem working towards a singular goal.
For equitable engagement with communities and community expertise, a) the purpose and goal of the engagement should not be determined by the outsider but either by both the outsider and the community or by the community; b) the community’s interest should be at the core of the engagement and at the core of every decision made in the engagement process; and c) there should be at least a mutual benefit or the primary benefit should be for the community.
Crucially, it should not be the outsider (scientist/researcher) deciding to what extent to engage the community in ‘their’ project.
Community engagement toolkits and guides distinguish between levels of engagement that lie on a spectrum or continuum. These range from merely informing the community to empowering the community (source/source). We at Centric argue that for true equitable engagement the community must always be empowered -- if this is the level of engagement that the community wants. In our ‘How To’ manual included in this report, we provide principles (and associated methods) that we argue should be followed in every community engagement activity.
At this point, we would like to highlight the two ways in which a community engagement process could be started. The common understanding of community engagement is that an outsider -- a scientist, planner, or policymaker -- approaches a community, for example, because they want to do research, they are planning a new development, or there will be a change in policy. This is a common situation in which the outsider may think about ‘how to engage the community in their project.’ However, there is a second way in which a community engagement process can be started, and this is when the community approaches the outsider, for example, because there is a problem in their area that needs to be addressed/solved. In this case, the initiative does not come from the outsider. In this situation, especially, when it is the community who shows the initiative, the outsider must respect and value the community and their expertise. Equitable engagement with community expertise is when community expertise is acknowledged always and not only when it is the outsider who initiated the engagement process and who is driven by their own, primary goal.
It is impossible to define equitable engagement in a single sentence because the concept is complex and multifaceted. Therefore, we developed seven principles that define equitable engagement. These principles apply to every form of community engagement, irrespective of who initiated the engagement process.
However, there are times when an outsider needs to approach a (researcher/scientist/planner) and generate engagement from ground zero. This can be if a new road needs to be created or expanded, or a potential health hazard has been identified, such as the spread of a virus. In these cases we still refer back to equitable engagement and to our “How To Manual” further in this report. Ensure that equitable and strong communication channels are open, establish a relationship, and proceed with consent.
REFRAMING THE RELATIONSHIP BETWEEN COMMUNITY AND SCIENTIFIC WORK
In the community engagement literature, a distinction has been made between the community and the outsider. It is the outsider coming into the community, observing and/or making decisions, and leaving. The outsider may even have good intentions by engaging the community in their project (good intentions without consent are still a violation of trust), but it is the outsider’s project, and it is the outsider who decides to what extent to engage the community. All too often, it is the outsider who makes the decisions that ultimately affect the community. We argue that, for equitable engagement, the relationship between the community and the outsider must be reframed.
Let's take two scenarios. In one scenario the scientist wants to study a phenomenon in a community, or understand how current policy is affecting community health. In both scenarios, ‘the science’ is distinct from ‘the community’. It is either the scientist collecting data on the community, or data collected by scientists is used to make decisions for the community. It is time that we understand that lived experience is associated with knowledge, insight, and understanding of a given phenomenon. Lived experience is lived expertise, and this expertise must complement the knowledge, insight, and understanding gained by the means of ‘traditional’ science. It is inaccurate to assume that a scientist can grasp the complexity of a given phenomenon without engaging with community expertise. A scientist has the expertise of the phenomena from a mechanistic perspective, which is incredibly useful but we must admit its limitations. Furthermore, full expertise of a phenomena we have not experienced first hand is not possible for anyone. We must finally stop drawing a line between science and community and move towards an ecosystem of science where the whole range of expertise and intellect is valued. This is key to equitable engagement with communities and community expertise and to combating health inequities.
To move towards an equitable ecosystem of science, we must move away from outdated assumptions about what ‘good science’ and ‘valid evidence’ are. We must move away from focusing solely on big data; controlled laboratory studies; and ‘statistical significance’. We need to understand that the lived experience of every individual is valid and significant; that lived experience is lived expertise and must be valued and taken seriously; and that there is a whole range of intellects and knowledges which need to complement each other to achieve equitable health solutions.
Inuit Tapiriit Kanatami
To illustrate our points, here is a case study from an Inuk community, the Inuit Tapiriit Kanatami, the representational organisation for the 65,000 Inuit in Canada. Their National Inuit Strategy on Research (NISR) is a powerful example of communities demanding inclusion and self-determination in research (as opposed to exclusion and ‘being studied by the scientists’). Their research strategy ‘envisions research being utilised as a building block for strong public policies, programs, and initiatives that support optimal outcomes for Inuit that in turn benefit all Canadians’ (source).
OUR HOW-TO MANUAL
In this manual, we propose seven principles that define equitable engagement with community expertise. These principles should be at the core of every community engagement activity. To develop our principles, we worked through existing guides and toolkits, such as Principles of Community Engagement, Engaging Communities Toolkit, and Community Planning Toolkit – Community Engagement -- useful resources which provide a good overview of important principles and methods for community engagement. However, these guides tend to focus on the scenario where the outsider wants to engage the community in their project. As described earlier, we argue that it should not be the outsider’s purpose driving the community engagement activity, and it should not be the outsider making the final decisions that ultimately affect the community. As we face deeper challenges stemming from the degradation of our Planet due to air, soil, and water contamination, we will need to build equitable scientific ecosystems that value both scientific and community expertise to fully understand how we will move forward as a society.
It is important to keep in mind that every community is different and that there is no one-size-fits-all way to engage with a community, we cannot make universal rules. Instead we are presenting principles, which are a baseline of considerations. However, the methods and tools should be chosen carefully and appropriate to the community context. For inspiration, we would refer the reader to the Engaging Communities Toolkit which provides an overview of different tools as well as their advantages and disadvantages.
In Centric’s ‘How To’ manual, we do not describe tools but principles that always apply, i.e. in the context of every community engagement. These principles do not tell you what method or tool to use (e.g. fact sheets, surveys, or workshops) because this will depend on the specific context of the community engagement activity. Rather, these principles build a system of belief and behaviour. They tell you what you need to keep in mind and what you need to do in any community engagement activity to ensure equitable engagement.
Having worked through the different documents and after thorough discussions, we propose the following nine principles:
-
Our first principle is collectivity. Collectivity can be defined as ‘the experience or feeling of sharing responsibilities, experiences, [or] activities’ (source). In the context of equitable engagement, it means working collectively (i.e., as a group) towards a goal. This is the first of our seven principles because it is the prerequisite for any equitable engagement process. The ‘outsider’ and the community must identify as a group with a shared purpose where each and every individual’s voice and expertise are valued and respected, and where all individuals collaborate to work towards a shared goal.
An important question is: Who is part of the collective? The simple answer would be: the outsider and the community. However, as we have mentioned above, the community is not a homogenous entity but rather consists of individuals and sub-communities with diverse histories, cultures, values, interests, and more. Depending on the size of the community, it may not be feasible for every individual to join the collective. Also, it is likely that not every individual would want or would have the time to be part of the collective. However, every individual’s views, values, and interests should be represented as accurately as possible. Therefore, it is important to build a diverse group that includes several representatives of the community. While it may be a challenging, iterative, and time-consuming process, this is crucial to ensure a process that considers the whole community and that is truly equitable. How exactly to approach this process depends on the specific context, but assembling a representative, diverse collective likely requires several iterations of observing, identifying, and having conversations with members of the community. Ideally, depending on the project and who initiated it, the process of building a diverse collective should be at least partly community-led. It would also be useful if the outsiders themselves were a diverse group. This could help to avoid or overcome potential challenges regarding communication, barriers to engagement, and conflicts related to different expectations or priorities.
Another important question is: What is the purpose of the project? We have already mentioned that the community or the benefit for the community should be at the core of the purpose. We will talk about this further in our fifth principle: reciprocity & mutualism.
-
An important aspect of being part of a collective is self-awareness:
Who are you?
What is your role in the collective?
What is your expertise?
What do you know and what do you not know?
What is it that you can contribute?
Self-awareness is defined as ‘good knowledge and judgment about yourself’ (source) or as ‘the capacity of becoming the object of one’s own attention’ (source). The concept of self-awareness is complex; it includes thinking about one’s past and future, emotions, thoughts, goals, and more. Self-awareness is not only self-attention but is also associated with self-reflection, self-evaluation, and self-regulation.
In the context of equitable engagement with community expertise, self-awareness means being aware of yourself and your role in the collective; it means being aware of what you know, what you don’t know, and what you can’t know. For successful, equitable engagement with community expertise, the ‘outsider’ must be aware of the limits of their expertise. Of course, they have expertise, but they must be aware that their profession or degree does not make them omniscient. It is important for the ‘outsider’ to be aware of the context (i.e. community and project) and to learn as much about it as possible. In that process, however, they must be aware that they can only learn so much and that they will never truly know what it means to live in a certain neighbourhood, with a certain problem, and as a certain person. The ‘outsider’ has their own, valid experience but must be aware that this experience is driven by their own background and that other people have other (lived) experiences.
It is easy to observe and study a phenomenon and think that you then have a good understanding of that phenomenon. This is a pitfall we all probably fall into again and again. Being aware of this pitfall, however, allows us to do better. In any given project or process, we must always remind ourselves of who we are and what we know, and we must do this not only once but repeatedly. We do not have to be omniscient, and we do not have to be the sole expert to make a contribution. Rather, we must be honest about what we can and what we cannot contribute. A good level of self-awareness is crucial for equitable engagement with communities and community expertise.
-
Our third principle, honesty, is absolutely necessary for equitable engagement with community expertise. In the most obvious sense, it is clearly unethical and inequitable for any ‘outsider’ or any member of the collective to outright lie to the other -- particularly as this behaviour usually serves to manipulate others for personal gain. It is important to note, however, that our definition of honesty is not simply refraining from telling outright lies, but also being forthcoming with the truth. This is more aligned with definitions of honesty that imply ‘truthfulness, uprightness, and integrity’ (source), and can also include transparency, which implies an openness in relating to other people (source).
Building upon our last principle, self-awareness, the principle of honesty not only encompassess the practice of honest introspection, but the practice of being honest and open about what you have learned from honest introspection or, in other words, openly acknowledging and communicating the limitations to your knowledge and expertise. For this to happen, it is important to establish honest and transparent working relationships between those working as a collective through open lines of communication. This can be facilitated through open group conversations, in a safe and equitable space, where members can talk honestly and open about:
Reasons for being a part of the project.
Intentions.
Aims of the project.
Expertise/skills and their limitations.
Compensation/pay
Such discussions and lines of communication are integral prerequisites to establishing fully informed consent, trust-building, and developing a shared -- if not community-led -- purpose. Being honest and vocal about initial intentions, expertise, and limitations to that expertise also helps the ‘outsider’ to go one step further from being self-aware and honest to being willing to listen and to learn. This willingness to value other people’s perspectives and expertise is the foundation for our next principle, flexibility.
-
Closely linked to self-awareness and honesty is our fourth principle: flexibility.
Once you are self-aware and honest you also have to be flexible; you have to be open to modifications of your original idea and willing to make compromises. The ‘outsider’ may approach the community with a set project, purpose, and plan.
This set plan may be based on good intentions; however, as soon as a collective is built, conversations are held, and new insights are gained, the ‘outsider’ must be open to changes to their original plan. The willingness to listen, learn, be proven wrong, and adapt is key to equitable engagement with community expertise.
Being self-aware and honest is only valuable when translated into action, i.e., into changes that serve the overall purpose of gaining a true understanding of a phenomenon and, ultimately, benefiting the community.
-
The first facet of principle 5 is reciprocity. Reciprocity can be defined as ‘the exchange of something between people or groups of people when each person or group gives or allows something to the other’ (source). In this context, this denotes that both ‘outsiders’ and the community benefit in some way from the collective. However, it is integral that this benefit is balanced -- the community should benefit equally, if not more, from the relationship than ‘outsiders’. Thus, the second facet of this principle is mutualism, defined as ‘the doctrine that the interdependence of social elements is the primary determinant of individual and social relations, especially the theory that common ownership of property, or collective effort and control governed by sentiments of brotherhood and mutual aid, will be beneficial to both the individual and society’ (source). Taken together, both facets of this principle describe a relationship that intrinsically and equally benefits everyone in the collective, or disproportionately benefits the community.
In order to work in alignment with this principle, it is important that ‘outsiders’ recognise that communities are always imparting and sharing their expertise, and, thus, are always benefiting the ‘outsider’ and providing a valuable contribution to the aims and success of the collective work.
Therefore, open discussions from the outset of any collaboration should carefully consider in what way the project/’outsider’ can positively contribute to both individual community members and the community as a whole.
The aforementioned importance of developing a shared/community-led purpose is integral to this. Further, the collective can consider how the ‘outsider’ can give back to the community by, for example, providing their expertise, building (research) capacities in the community, or providing financial or human resources.
-
The sixth principle is that the longevity of any project or work that involves members of the community is carefully considered and guaranteed from the very start of the project. This is crucial for equitable engagement with community expertise, as it is exploitative and therefore wrong to benefit from community expertise and then leave without ensuring a long-lasting benefit for the community. We described in our fifth principle that it is important to compensate community members for their time and contribution to any given project, not only because it is important to equalise the value of their expertise, but also to give every member of the community the chance to contribute (not only the ones that can afford to contribute their time and energy for free). While this short-term compensation is necessary for equitability, it is not sufficient. The whole community (not only individual members) must also benefit in the long-term.
The benefits for ‘outsiders’ who engage with community expertise may take different forms but will always be long-lasting. Obvious examples of ‘outsiders’ achieving a long-lasting benefit include, for example, a scientist publishing a scientific paper that will further their career, or a developer showcasing their work in a portfolio. Although less obvious, at the very least the ‘outsider’ will gain key insights and expertise from communities whom they had previously not known about. This knowledge, along with the whole process of working with a community to which one is unfamiliar, can be harnessed to inform and shape future projects and work. Therefore, the whole process of working collaboratively with community expertise is lastingly beneficial to non-members of the community. For engagement to be equitable, it is essential for projects and work to have long-lasting benefits to, and support for, communities.
Longevity can be promoted in several ways. For example:
Developing a long-term partnership
Building a community panel for the future
Training the community to do their own research
Securing funding for future community-led research
Providing employment opportunities
-
The first six principles are prerequisites for our seventh principle, community sovereignty.
Community sovereignty can be defined as the power of the community to control their own governance over their community, which can include health, food supplies, economics, policy creation, or place making (source). This is what the Inuit Tapiriit Kanatami demand in their research strategy: self-determination in research. The concept of community sovereignty goes far beyond informed consent.
It not only means that communities accept and maybe become involved in research ‘on them’. It means empowering communities to develop their own research agenda and to access funding for research. It means finally giving communities back their rights that should never have been taken away in the first place. This includes access, control, and ownership over information and data, as identified as one of the five priority areas in the Inuit Tapiriit Kanatami research strategy (source).
Of course, there is great value in collaborations where both the outsider and the community contribute their expertise. However, communities are more than capable of running their own research projects. It is time to give them back their rights to self-determination and sovereignty.
-
Informed consent is usually used within the context of healthcare with its formal definition being “Informed the process in which a health care provider educates a patient about the risks, benefits, and alternatives of a given procedure or intervention” (source). We want to extend this definition outside healthcare and into equitable engagement.
In order for the other principles to stand, the community has to be well informed, this may include providing information in various languages, various mediums (digital, written, spoken), it should also be translated in a cultural context. Many words that we use could be alien or have very different meanings depending on cultural context. It is also important to note the consent is procedural rather than a stand alone moment. It might be a good idea for the objectives and progress of the study to be laid out in a communal knowledge portal like a Google doc or a website. This is for the community to reference, should they need reminding. Finally, if any updates to the study occur, this is a great place to make updates. These updates should also be clearly announced.
Consent must be asked throughout the project, furthermore, consent can be redacted at any moment. Many studies can take months or years, where life and perceptions can change, therefore it is important for consent to be asked at various points. Furthermore, within an equitable ecosystem, there should be an opportunity to redact consent.
If consent is redacted, then it is imperative that the “outsider” stops immediately and addresses the points that resulted in the redaction. Here is a point to address the principles again and make changes to methods and tools used. Should the community wish to stop, then the “outsider” should enact self awareness and understand if it is negotiable or if it is an end.
-
Trust is the organic output from following the 8 other principles.
Trust is the ability to rely on the character, ability, outcomes, or truth of the ecosystem and its various components.
With trust a project can move smoothly, longevity, and accuracy. Just like consent, trust is always evolving and needs continual work. It also changes in its conceptualisation. For example, the trust needed to conduct a town hall versus a long term study is very different. Therefore, trust should also be established within the context of the project.
INTERVIEWS WITH RESEARCHERS
This report is 2/2 in a series about equitable community engagement. In the previous report we interviewed community members and for this report, we interviewed three practitioners from various backgrounds and with different experiences in equitable community engagement.
Suwen Chen
PhD candidate in Impact Investing at the University of Edinburgh and a social scientist
-
“We cannot just sit in an ivory tower in front of our laptop and imagine things or make things up. So, I have to actually engage with the community and then that is how they enable us to collect the data and analyse the data, and to see things from their perspective.”
“Sometimes we think we want to guide them with our research result, but actually it is them guiding us. [...] This two-way process is mutually enhancing in terms of how we see the world.”
“There is no silver bullet. There is no one single best approach. It is more like our attitude as a researcher and also our willingness to engage with a community that matters than specific types of methods or tools. [...] The best approach would depend on who you are working with, what you want to achieve, and why you are doing what you have been doing.”
“When you think about doing research with a community, it’s always good to put yourself in their shoes. So, what can they benefit from your research, rather than thinking what can I get from them.”
“We have the privilege to do whatever research we want, but for them it’s their life [...] They have to make money, they have other things. So, what we are asking them, their time and their involvement, is actually a huge cost for them.”
“It may have to do with our own identity and our responsibility as a researcher. So, who has the power or the authority to define the problem? Because sometimes when we write our research questions, we may not consider the community; but they should be the ones who define the problem because they know the problem better.”
Dr. Juwairia R. Quazi
Lead at Planetary Health Lab, Global Health Academy – University of Edinburgh
-
‘It is very important to work with communities that you are designing interventions for. There are some things that you can miss if you don’t work with the cultures that are already there.’
‘One of the things that we need to remember is that we are not repeating the process of dispossessing people from their legacy or their history when we are thinking of interventions. We are thinking of including them.’
‘Sometimes when you are developing a solution from the outside and you are trying to impose it on a group of people, it doesn’t work that way. And a lot of development work fails because of that one core reason.’
‘There is a lot of research historically in the sociological and in the social sciences that is dehumanising.’
Prof. Ilan Kelman
Professor of Disasters and Health - University College London
-
‘It is not about dissing science, or undermining it, or setting it aside, or avoiding it. Just that we always need to bring together different approaches and knowledges to try and corroborate, to use each’s strengths, to overcome each’s limitations.’
‘And it can be a long process and require very careful steps and interaction to convince people to jump out of the box which they are in, and also which we are in, because we have our own boxes, and we have our own biases.’
‘So, if a scientist is telling you, “We only have 15 years of data, and only 14 people have died of cancer, this is not good enough”, you need a better scientist.’
RELATED WORK
