Spotlight on effective engagement: seldom heard communities

Like most engagement practitioners, we love coming across toolkits to help guide our work. We also benefit greatly when we learn from real-world examples. This article breaks down a series of four consultations co-facilitated by Health Consumers Centre and different community organisations, where we translate templates into practice.

Whilst we could have written four separate articles featuring each of the groups we connected with, we made the choice to feature them side by side to share the commonality and diversity of experiences working together to facilitate meaningful engagement. This article has been reviewed and contributed to by the four community organisations we collaborated with.

You may find this article helpful if you would like to:

• Find out about some amazing community organisations to engage with
• Break down the practicalities of ‘how’ to engage with different groups
• Deepen your understanding of the nuances of working with different population- or health condition-specific groups
• Read valuable tips for better planning for and engaging with seldom heard communities

You can navigate to the sections of the article that are most relevant to you by clicking the hyperlinks above.

A note on language: We are intentionally calling this series of engagements what they were – consultations. With buzz words like co-design being thrown around and regularly misapplied, we are making it our business to use terminology as accurately as possible. Consultations get a bad rap due to tokenistic practices. However, when done well, they absolutely have a place in your consumer engagement plan.

What we set out to do

Health Consumers Centre undertook part of a research project led by La Trobe University, in collaboration with Deakin University, and Curtin University. The research is focused on consumer preferences about telehealth for allied health services as is funded by the Australian Government and Digital Health Collaborative Research Centre.

Our role was to shape and lead the consumer and community engagement elements of the research project. This included convening a Consumer Reference Group and planning and facilitating eight focus group discussions. Four of these focus groups were hosted by Health Consumers Centre online, for people around Australia to join. While we have mechanisms in place to ensure our online groups are as diverse as possible, we wanted to ensure that we were deeply interrogating the topic with people who experience higher rates of health inequity. We chose to partner with community agencies to run the other four focus groups, and by doing so we were able to uncover insights we may not have with a single method. More information about the project and the different consumer engagement approaches taken can be found in the study protocol.

We wanted to share some insights from our experiences facilitating four of the eight focus groups in partnership with community organisations and leaders.

Our aim was to reach up to 32 diverse and seldom heard consumers and carers that have used allied health services and who were unlikely to hear about, or sign up for, an online focus group. Our approach was to partner with community and population-specific organisations and community leaders with existing trusted relationships with their respective communities.

Who we worked with

We reached out to six services to gauge their interest in co-facilitating the focus groups, of which four responded to say they had the capacity to be involved in the project. These were all warm connections, meaning we had had at least one instance of communication or collaboration with someone at the organisation prior to this project. If you are committed to meaningfully engaging with seldom heard communities, make sure you have these organisations on your radar:

Kindred Clubhouse offers a free peer-support model in the Frankston Mornington Peninsula region for people wanting to improve or maintain their mental health through friendships and purpose. Kindred Clubhouse is run by members, and for members, meaning members living with complex mental health needs are working side-by-side with staff, as peers and partners, to run every function of the Clubhouse.

Deaf Victoria is the peak advocacy body representing deaf and hard of hearing Victorians. They aim to ensure deaf and hard of hearing people in Victoria experience equality, opportunity, connection, and are valued for their unique contributions towards a diverse society.  Deaf Victoria undertakes project work in areas of systemic advocacy or capacity building, to promote a more accessible mainstream community, and resilient Deaf and hard of hearing communities in Victoria.

Youth Disability Advocacy Service (YDAS) is an advocacy organisation dedicated to supporting disabled young people aged 12 to 25 to achieve their human rights. They provide systemic advocacy to improve policy around issues that are important to young people with disability. YDAS works to ensure that the interests of young people with a disability are heard by government, and other decision-makers.

Engage Pasefika is a community-led organisation that addresses intergenerational Pacific Islander health inequities. They acknowledge the inherent power structures that disable empowerment, equitable access, and inclusion to health services. They work towards emphasising the role of culture in understanding health, and work collaboratively with stakeholders and partners to reduce health status disparities.

At the Health Consumers Centre, we aim to foster lasting relationships with each group, extending well beyond this project’s end. Building and maintaining reciprocal connections is key to driving and sustaining positive changes in the health system. Our goal is to create a dynamic, diverse network of skilled and supported stakeholders ready for activation. We also see ourselves as a conduit between different parts of the sector. If you would like to explore collaborations with these organisations, you are welcome to reach out to us at healthconsumers@deakin.edu.au and we can introduce you.

How we did it

Below we share the key elements of the engagement process with each organisation. We aim to give you a snapshot of what it practically takes to meaningfully consult with consumers.

We reached 28 people in four 2-hour focus groups. Whilst this may appear to be a relatively low number, it is important to unpack the level of resource and attention to detail that goes into truly engaging safely and effectively with people who are often not engaged.

A snapshot of what it took to deliver these four focus groups*:

• 90+ hours of Health Consumers Centre staff in planning and delivery time
• 400kms travelled
• 11 weeks from reaching out to the first organisation to finishing the last focus group
• $9,900 in direct project costs, including consumer payments, catering, venue hire, and paying the community organisations.

*Keep in mind this is just what it took for the Health Consumers Centre to deliver this component of the broader project and is not inclusive of the time and resources of the partner organisations.

The questions for the focus group were developed by the research team in collaboration with the project’s Consumer Reference Group.

Breaking down the engagements

Planning

Kindred Clubhouse

• Travelled to the Clubhouse in Hastings to meet face to face.
• Learned about recent developments at the Clubhouse.
• Discussed and secured approval for focus group from members.
• Stayed to share a meal prepared by members.

Deaf Victoria

• Held initial online planning meeting with Deaf Victoria’s manager with Auslan interpreter present.
• Additional community engagement planning conducted via email.
• Extensive planning with venue team to set up environment.

YDAS

• Sent a brief to YDAS via email and held an initial discussion with the YDAS Programs Manager.
• YDAS developed a proposal, including costs for their services and a budget was agreed.
• Met twice more lived experience staff to discuss co-facilitation needs and materials in detail.
• Received and incorporated feedback and suggestions to better tailor the materials for the participant cohort.

Engage Pasefika

• Held three online meetings between Health Consumers Centre and Engage Pasefika.
• Altered the discussion-based focus group to include a written activity, based on advice.
• Adjusted the plan to include a prayer at the start and end of the event, led by community members.
• Responded to feedback that the original venue booked was not suitable.

 

Recruitment

Kindred Clubhouse

• Provided the Clubhouse with a one-page summary of the research project and focus groups.
• Included responses to pre-empted questions members might have about the engagement.
• Sent sample questions to participants two days before the event.

Deaf Victoria

• Created an online expression of interest form and developed visual assets to support promotion.
• Deaf Victoria provided feedback on better tailoring the images and text that better reflects dead and hard of hearing people.
• Deaf Victoria promoted the opportunity to their database.
• Registrations occurred in the few days leading up to the event.
• Sent sample questions to participants on the day of the event.

YDAS

• Created an online expression of interest form and supporting materials, including FAQs.
• YDAS promoted the opportunity through their networks.
• Monitored applications as they came through and provided updates to the YDAS team.
• Made the final selection of a diverse group of participants from the applicant pool.
• Some participants needed phone calls to confirm their attendance.
• Emailed participants sample questions and FAQs a week before the event to help them prepare.

Engage Pasefika

• Provided Engage Pasefika with a 1-page overview of the focus group opportunity, a list of FAQs and tailored visual assets for promotion.
• Engage Pasefika recruited participants through email, social media, and a ‘tap on the shoulder’ approach.
• Most of the focus group participants attended the group with at least one relative.

 

Venue

Kindred Clubhouse

• Held in the Clubhouse, a safe and familiar venue for participants.
• Timed to fit within the usual schedule that members attend the Clubhouse.
• Facilitated in the main room of the Clubhouse where other members were also present.

Deaf Victoria

• Held in a large meeting room at Deakin’s CBD office.
• Met Deaf Victoria’s accessibility and location requirements.
• Shifted to a hybrid format on the day to include two additional online participants.
• After hours hiring costs incurred.

YDAS

• Originally planned as a hybrid event at YACVic’s office in CBD.
• Participants preferred to join online.
• Event shifted to an entirely remote format three days before the event.

Engage Pasefika

• Hosted in a meeting room at a community centre in Craigieburn.
• The venue was close to participants, accessible and low cost to hire and included access to a kitchen for catering.

 

Timing

Kindred Clubhouse

• Late morning, 10.00am-12.00pm.
• One scheduled break.
• Lunch followed.

Deaf Victoria

• After hours, 5.30-7.30pm.
• Refreshments on arrival and during a scheduled break.

YDAS

• Late afternoon, 4.00-6.00pm.
• Two scheduled breaks.

Engage Pasefika

• After hours, 6.00-8.00pm.
• Shared food during the discussion.

 

Staff/ supporter involvement

Kindred Clubhouse

• 4 people involved.
• Clubhouse founder co-facilitated with a Health Consumers Centre practitioner.
• Clubhouse director and Health Consumers Centre manager also participated in initial planning meeting.

Deaf Victoria

• 10 people involved.
• Two Auslan interpreters and a note taker present in person.
• A captioner joined online.
• Two Deakin Downtown staff set up IT for remote participation.
• Two Health Consumers Centre staff members and one Deaf Victoria staff member planned and facilitated the group.
• One participant was supported to attend and participate by their support worker.

YDAS

• 5 people involved.
• Two facilitators, one from YDAS and one from Health Consumers Centre.
• One Health Consumers Centre staff member on standby for wellbeing support (contactable by phone or email).
• YDAS Programs Manager and Program Officer involved in the planning stage.

Engage Pasefika

• 4 people involved.
• Planned and facilitated by a Health Consumers Centre practitioner Engage Pasefika’s founder.
• Administration coordinator from Deakin University supported venue booking and food shopping.
• Health Consumers Centre manager involved in the debrief meeting.

 

Timeframe from initial contact

Kindred Clubhouse

• 4 weeks

Deaf Victoria

• 5 weeks

YDAS

• 10 weeks

Engage Pasefika

• 11 weeks

 

What some of our partners thought

Words from the members of Kindred Clubhouse

As members of Kindred Clubhouse, and individuals with a mental health lived/living experience, we were extremely grateful to be asked to provide feedback on our involvement using allied heath, telehealth services.

We felt accepted, purposeful and empowered during the consultation process. By having our say, we felt in charge of our own destiny and recovery because we were made to feel like our input and sharing our knowledge really mattered.

We felt privileged to be involved in a project that will have impact on others who may be using the telehealth system, and we hope our input will benefit the broader community.

The consultation opened our eyes to what changes need to be made within the system, where the gaps are, and how this impacts our community.

Kindred Clubhouse’s involvement in the project was important because it amplified the consumer’s voice and brought members together in a safe environment to be able to share openly and honestly and not be judged.

Once again, we thank the Health Consumers Centre and Institute for Health Transformation for allowing us the opportunity to be involved in such an important project and for valuing the consumers’ lived/living experience.

We look forward to future opportunities to share our experiences from a consumer perspective.

Reflections from Anasina Gray-Barberio, Founder of Engage Pasefika

Pacific Island Communities are relational people. In order to build rapport and trust, engagement strategies need to be considerate of our values of reciprocity, authenticity, mutual respect and community.

The process of working with the Health Consumers Centre was reciprocal, flexible and adaptive to our community availability and needs. The Health Consumers Centre were respectful of our location and level of health literacy and ensured the process reflected this.

Community members who attended the Talanoa were excited to see representation in this engagement through Engage Pasefika and felt culturally safe in the space to share their stories and lived experiences. The barriers to access were lowered when you have representation from community through the partnership of Engage Pasefika and Health Consumers Centre.

It is significant when engaging with Pacific Island communities that you take an intersectional, cultural humility approach, this signals you are open to learn about our community and their experiences. It is also acknowledging the power structures that exist which can oppress and entrench communities to fully participate and access health services.  When engaging Pacific Island communities their values, customs are critical to a meaningful collaboration and fostering of trust.

What we learnt

Engaging with population- and health condition-specific organisations provides an amazing opportunity to experience the nuanced needs and strengths of different communities. We learnt something unique from each of the organisations we worked with and the participants we met along the way. We bring an openness to trying new approaches and to getting things wrong and making them right. We framed this from the outset of these engagements – that we were here to learn from the organisations about what works best for them and their community, rather than coming in as experts.

If you are a practitioner looking to advance your practice, it is these types of learnings that will elevate how you operate in the consumer and community engagement space. Applying this knowledge requires you to be highly adaptable and openly flawed, welcoming shifts to your processes and sharing power. Here’s what we learnt…

Learning #1: Member-led decision making matters

Kindred Clubhouse is built upon on the international evidence-based Clubhouse model. This is a community-based approach that supports individuals with mental health challenges by co-creating a safe space to participate in meaningful routine, social activities, and employment opportunities. Unlike traditional treatment or support settings, consensus-based decision-making processes are used, meaning that members (those using the service) actively participate in the day-to-day operations and governance of the Clubhouse.

Typically, researchers, engagement practitioners or project leads might reach out to a community organisation with an engagement opportunity, and a staff member would approve (or not approve) the engagement going ahead. Not in this case. When we emailed Kindred Clubhouse with the opportunity, the staff took it to the members to decide if it was something they were keen to pursue. It was then important for us to show up at the Clubhouse and chat about the opportunity face to face, so members could have their concerns addressed, their questions answered, get to know the person that would be facilitating, and be able to select a date and time that worked for them. Only then did we get the green light to proceed with the engagement, from the members themselves.

It is important to acknowledge that we had already worked with the Clubhouse on a previous project, so we were building on established relationships. While incredibly valuable, we realised this also brings with it sensitivities. Some members had taken part in a co-design project around a new model of care in their local area. They were yet to see the recommended changes from the project being implemented by the health service, leading to some frustration and disillusionment. Managing expectations and building trust needs to be an ongoing priority.

Learning #2: Hybrid meetings with deaf and hard of hearing communities require focused effort and resources to enable participation

The focus group with Deaf Victoria gave us a whole new level of appreciation for the barriers that exist for deaf and hard of hearing community members. Philip Waters, the General Manager of Deaf Victoria, provided a lot of direction around the different supports that were needed to host an in-person meeting. Plans shifted to a hybrid meeting at the last minute, and we who could not sign, learnt on the fly about what it takes to successfully set up a hybrid meeting comprising deaf and hard of hearing community members.

The human resource requirements included:

• Auslan interpreters: We had two qualified Auslan interpreters in attendance. Some participants asked to know the names of the interpreters in advance, and it’s important to be aware that some deaf people have had negative experiences with certain interpreters, which may deter them from taking part in an engagement.
• Live captioner: A deaf participant that wasn’t yet proficient in Auslan requested captions to enable her engagement in the expression of interest form, which meant we only had a few days to get this organised. While auto-captioning on Zoom and Teams is improving, there are still too many errors with these supports to enable meaningful participation. A professional captioner joined remotely and provided accurate, real-time text of the spoken content (although we found there was a notable delay in the captions appearing). In future, it would be better to book the captioner in advance and cancel if no participants needed this service.
• Facilitators familiar with accessibility needs: We had a lead facilitator and support facilitator from Health Consumers Centre. The lead facilitator needed to set the pace of the engagement, to allow enough time for the participants to provide responses and to accommodate periodic role switching between the two interpreters. The support facilitator was able to liaise with the venue and technical support staff to overcome issues arising during the session. They also read out comments left by online participants in the chat to make them accessible to all participants and the interpreters.
• Technical support staff: It was essential to have IT personnel on hand to ensure that the needed equipment and software were tested ahead of the meeting, and to promptly address and resolve any issues during the session. The captioner used a program that required a high degree of IT nous to integrate with the video conferencing setup in the meeting room.
• Note taker: The focus group was recorded so that the transcript could be analysed by the research team, however, we also had a dedicated note taker in the room that was booked in advance. They were responsible for taking detailed notes which can be helpful, particularly for summarising discussions. As the transcript from the captioner captured a verbatim meeting record, some resources could have been saved by not having the note taker involved.

The physical and online environment setup:

The room and camera set up was critical to ensure participants could engage meaningfully. It is very important that all participants, interpreters and facilitators can see each other clearly. If the room is large, this can be a challenge, especially if the camera cannot zoom close to people’s faces and upper bodies to maximise the viewability of signing and facial expression. How we set up the space:

• The interpreters sat next to the lead facilitator at the head of the table, and the participants sat across from each other along the sides.
• The facilitators and interpreters faced the camera so that the people online could see them clearly.
• The cameras were fixed so that the interpreters would be visible and large enough on screen for the online participants to follow their signing.
• Laptops were set up in front of the participants in the room so that those online could clearly see what each person was signing.
• The participant using captions had a laptop in front of them to display the captions.

Despite lots of planning, some things didn’t go as planned, but that was ok. At the heart of our practice is always being open, humble and providing a safe space for participants. As such, they were forgiving of us needing to figure out some of the logistics as we went. Participants reflected that being given the opportunity to express their experiences and be truly listened to was uncommon for the deaf community.

We wanted to share this learning to make it easier for others to prepare for engagements like this in advance. Here are some other helpful resources that you can refer to:

Working with people who are deaf or hard of hearing fact sheet  – Department of Health, Queensland Government

How to work with interpreters – DeafNav

Learning #3: A communication order can alleviate anxiety in an online discussion

We learnt a lot from Mac, our highly skilled co-facilitator from YDAS. He had previously held roles as an advocate engaging in these kinds of forums, so he had insight into what it’s like being on the other end of the questioning.

The focus group facilitated with YDAS shifted to being an online event, rather than hybrid as initially planned, due to participants preferring to join remotely. During a planning discussion, Mac suggested that we could incorporate a tool called a ‘communication order’ in the focus group. A communication order is a simple way to manage who speaks and when during an online meeting. It helps keep the conversation organised, making sure everyone gets a chance to share their thoughts without talking over each other, and can help alleviate some of the anxiety that might come with participants not knowing when they should speak.

What this looked like in practice:

1. Writing the participants names in a random order in the chat at the start of the focus group with a number next to each name.
2. Explaining to the participants that we would use this order throughout the focus group when inviting responses to the questions asked.
3. Giving participants permission to skip their turn at any time.
4. Re-pasting the communication order in the chat throughout the meeting so it could still be seen.

The main aim of this was to keep things clear and make sure everyone felt included in the discussion.

Learning #4: Cultural practices and symbols help to create safety

Instead of calling the gathering with Pacific Island community members a focus group, we shifted our language to calling it a Talanoa. This is a new term we learnt from our co-host and founder of Engage Pasefika, Anasina Gray-Barberio. Talanoa is a traditional concept or framework from Pacific Island cultures that refers to a form of storytelling or dialogue. It involves open, informal, and inclusive conversation where people share their thoughts, ideas, and experiences in a respectful and empathetic manner. During Talanoa, participants build trusting relationships and deepen knowledge by fostering empathy and understanding. It creates a stable and inclusive dialogue, providing a safe space grounded in mutual respect, which serves the greater good. More information can be found here.

Anasina arrived at the community venue wearing a flower behind her ear and carrying a large wooden bowl. She placed the bowl in the centre of the table that the group was to gather around.  We learnt that the Tanoa (or Kava bowl) is a traditional wooden bowl used in Pacific Island cultures for mixing and serving kava, a ceremonial drink made from the root of the kava plant. The Tanoa bowl is an essential part of cultural ceremonies and social gatherings, symbolising community, respect, and connection. The Talanoa also opened and closed with a prayer said by different participants.

These adaptations to our typical format helped honour Pacific culture and created a sense of safety and belonging for all present.

Our advice to you

Finally, we share seven tips that you might think about integrating into your engagement practice.

1. Don’t rinse and repeat – True engagement means understanding the unique needs of each community and adapting your approach accordingly. This is always going to take more time than you think it will and the answers will come from them.
2. Add a budget line – Allocate adequate staff resources for planning and delivery and budget for all costs, including compensating community organisations for their time and expertise, and paying consumers. This respects the valuable contributions of those involved.
3. Get out there – Build trust by going to where people are, rather than expecting them to come to you. Face-to-face interactions and meeting people in their familiar environment demonstrates commitment and helps to break down barriers and foster genuine connections.
4. Flexibility is key – Be ready and always willing to adapt your plans. Different communities have different rhythms, and your approach should respect that. There will be last-minute changes; handle these with grace and good humour.
5. Invest in relationships – Build and maintain relationships with community organisations to ensure ongoing dialogue and collaboration that extends beyond the end of a project. Find out what they need from you too; it shouldn’t be one-sided.
6. Be open to learning – Every engagement is a chance to learn something new. Approach each interaction with humility, curiosity, and a willingness to grow.
7. Close the loop – Share back the learnings and findings of the engagement with participants so they can know the contributions they have made. Also, make sure to acknowledge the communities in any papers or reports that are written.