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Plan & deliver a cancer screening project

How do I work with communities?

Why you need community consultation, examples of questions to ask.

What is community engagement?

There is no one commonly agreed definition of community engagement. Different practitioners, institutions and industries define it differently, and other terms used interchangeably with community engagement are public participation, community consultation, community development and community feedback.

One way of explaining community engagement is by the United Nations' Brisbane Declaration on Community Engagement (International Conference on Engaging Communities, 2005), which envisages community engagement as a two-way process by which:

  • the aspirations, concerns, needs and values of citizens and communities are incorporated at all levels and in all sectors in policy development, planning, decision-making, service delivery and assessment; and
  • governments and other business and civil society organisations involve citizens, clients, communities and other stakeholders in these processes.

Why community engagement is important

Community engagement should be a cornerstone of all cancer screening activities agencies deliver to communities. Members of the community know what messages, channels and activities resonates best with them. Engaging them early in the project ensures that activities are tailored to the unique aspirations, concerns and values of that community, better able to meet their needs which leads to improved outcomes.

An equal partnership between communities, service systems and agencies also ensure a greater sense of ownership of the issues, a greater take-up of the activities (e.g. more community members stepping forward to be peer educators; more resources being shared between community members) which leads to better outcomes.

What are the different levels of community engagement?

Community engagement is often depicted as a continuum, ranging from low-level engagement strategies such as consultation to high-level strategies such as empowerment. There are many models that looks at the different levels of community engagement. One model that is commonly used is the International Association for Public Participation's public participation spectrum. This may be a useful model to help you decide what level of engagement you would like to take on your project, and work out your engagement goals.

Inform Consult Involve Collaborate Empower
Public participation goal To provide the public with balanced and objective information to assist them in understanding the problem, alternatives, opportunities and/or solutions. To obtain public feedback on analysis, alternatives or decisions. To work directly with the public throughout the process to ensure that public concerns and aspirations are consistently understood and considered. To partner with the public in each aspect of the decision including the development of alternatives and the identification of the preferred solution. To place final decision-making in the hands of the public.
Promise to public We will keep you informed. We will keep you informed, listen to and acknowledge concerns and aspirations, and provide feedback on how public input influenced that decision. We will seek your feedback on drafts and proposals. We will work with you to ensure that your concerns and aspirations are directly reflected in the alternatives developed and provide feedback on how public input influenced the decision. We will look to you for direct advice and innovation in formulating solutions and incorporate your advice and recommendations into the decision to the maximum extent possible. We will implement what you decide.
Possible applications to cancer screening projects Providing information to public, partners and stakeholders through education sessions, workshops, newsletters, media channels and resources. Gaining community feedback through focus groups, surveys or interviews on resources, and creative materials or project plans. Focus groups or 1-on-1 interviews with community members and stakeholders about needs, barriers, motivators and types of interventions to develop project plan.
Consultation with community members on framing and tone of health messages, types of communication channels, types of imagery and design of materials, and channels to distribute information on screening.
Partner with community members through the entire project journey – from assessing barriers and needs, to workshops to design solutions, to how the project should be implemented, to how the project should be evaluated.
Co-design workshops with community to design interventions, activities or solutions.
Peer education models.
Provide resources to communities to develop and deliver solutions to improve screening in their communities.

For more information and examples of peer education, refer to the peer education manual in the related resources below.

Principles for engaging with community

Every project and every community is different, and we believe there is no 'one-size-fits-all' approach to community engagement. Below are a couple of principles we use in our community engagement activities:

  • Be conscious of what your organisation or team ‘bring to the table’ before starting any project or interaction with community. Are there unconscious biases held against the community or against why they are not screening? Is the community viewed from a 'deficit thinking perspective' and viewed as 'needing to be told what to do'? Seek to address any power imbalances by first examining the perspective you and your organisation take to a community.
  • Find out about the socio-political context and health belief models for the communities we work with. There is incredible diversity within communities and between communities. For example, what the ABS considers as 'Arabic-speaking community' represents people from 22 countries and can be divided into the geographical areas of Middle East, Gulf countries and Northern African countries, with diversity in dialect, religion and culture. Seek to understand not just the visible aspects of the culture (such as what colours are taboo or what language is used but more intangible aspects such as the way social relationships are viewed, or the way health is viewed).
  • Recognise that health is shaped by a multi-dimensional overlapping of factors such as race, class, income, education, age, ability, sexual orientation, immigration status, ethnicity, indigeneity, and geography. While it is tempting to consider a whole community by its label (e.g. CALD community or LGBTIQ community), recognise that every individual within the community is different and will have a different motivator or barrier to screening.
  • Look to the community for the solution. They are not victims to be saved, they are collaborators.
  • When facilitating interviews or focus groups, go to where the person or group feels most comfortable to speak. This may be in their neighbourhood, place of worship or community groups. As much as possible, compensate the community when you consult with them.
  • Acknowledge that partnerships take time (this is sometimes underestimated) and you may need a letter of intent or some way to show the partners that you’re interested in the outcomes of the project beyond its current funding period. A partnership agreement, memorandum of understanding or contract can be helpful tools to clarify roles and responsibilities, which could include data collection and expectations to produce outcomes.
  • Put a 'plain language' lens on all communication – from emails, to consultations to surveys to resources to presentations. Consider 'what are the barriers which may lead to a community member not engaging with this process'.
  • Always 'close the loop' with community partners. They have put in valuable time and effort into the process, and have the right to know results of the projects and next steps.

When developing a community consultation activity, consider the following questions

Why are we engaging with the community and what level of engagement are we aiming for?
  • Consider the IAP2 model and decide what is the level of engagement with community. Are you using community consultations as a way of finding out what the issues are, or to find the solutions? Is it to get feedback or endorsement, or to build community capacity? Is it evaluate and will the community be part of the renewal and continual development of the project?
When we ask the community?
  • At what timepoints of the project do we consult? Do we consult during project planning phase or before developing resources?
Who we ask in the community?
  • How do we ensure representation of the community in terms of who we consult?
  • Who should be running the consultations?
What we ask during consultation sessions? Sample questions include:
  • Is there a problem? What is the need?
  • What are the barriers to cancer screening? Examples of barriers include lack of perceived severity of cancer, language barriers, access or transportation barriers, lack of culturally appropriate health provider, cost.
  • What are the motivators to cancer screening? Examples of motivators include peace of mind; prevalence of the disease; personal susceptibility; value of early detection/treatment; time; cost; location; or availability of a culturally appropriate health provider, doing it to stay healthy for family.
  • What solutions or approaches do you think will encourage people to screen for cancer?
If developing resources or creative materials:
  • What health messages resonate?
  • How does the community prefer to receive messages (from word-of-mouth, by the media, by printed resources, TV)?
  • What TV shows, newspapers, social media channels or radio stations/shows does the community pay attention to?
  • What kind of imagery would you like to see represented in the project’s communications?
  • Find out if there are colours that symbolise health, and if there are colours to stay away from.
  • Find out if the community prefers photos of people they know, or if they are open to cartoons or other representations.
  • What kind of tone should the communication have?
  • Are there any times of year to avoid for communications? (For instance, in the Under-screened Recruitment Program, it was noted that promotion of health messages should be avoided during the Chinese New Year period.)
  • Get feedback on the cancer screening message and take key messages and see what the community thinks of the messages – do they hit the mark?
How do we conduct consultation? What is the community’s preference for consultation? Do we need more than one method?
  • Focus group
  • One-on-one interviews
  • Ethnographic research (e.g. observing how a person navigates through a health care visit)
  • Paper-based or online survey
  • Online engagement via social media
  • Are there innovative tools we can use e.g. card sort, role playing, rapid prototyping?

Peer education

Peer education is community members learning about cancer prevention from their peers and as peers. It happens between people who are seen as equals by one another in their community. Peer education can take place in everyday community settings such as the places where people gather (social groups, churches or schools) or in homes. Peer education tends to work because:

  • Peer educators know which health messages are more likely to resonate with (and be most acceptable to) others who are just like them, and how best to get these messages across. They are also sensitive to the types of non-verbal communication that exist within their communities.
  • Peer educators are perceived as a close, credible and trustworthy source of information, much more than mainstream health educators who can appear to be ‘distant’.
  • Information that is given peer-to-peer is more likely to be accepted by the community than if communicated by someone external or ‘outside’.
  • In the process of being trained and supported, peer educators gain ownership for action on the problem being looked at; and they, in turn, can empower others like them to do the same.
  • Peer educators can model the behaviour that is desired; they become credible role models in the eyes of those in their communities.
  • Over time, the influence of peer educators on individual behaviour change can actually contribute to deeper shifts in social norms within their communities, so that more individuals want to behave in the desired way.

An example of how peer education works:

  • The peer educator is educated on the key messages and starts responding to the messages themselves. For example, Maria who is 55 learns about the importance of mammograms through education at your organisation. She also learns that she is eligible to have a mammogram. Now that she knows early detection can help her live longer, she has a mammogram herself so she can ‘champion’ the cause and tell others about it.
  • Maria tells her family about the importance of mammograms and her experience.
  • Maria continues to spread her influence (through her personal experience) by telling her friends, and hopefully, Maria’s family members have already told their networks about the importance of mammograms.
  • This cycle continues with Maria’s colleagues and clients.