Engaging people with lived experience

Having a variety of recruitment methods is beneficial as it improves the reach of your project and the lived experience perspectives you are able to engage.

• Formal expression of interest: Here is an EOI template that specifically focuses on the co-design co-lead role which you can adapt for your project.
  Some examples of where you can recruit from include:
  • Metro North Engage
  • Hospital and Health Service Consumer Engagement Leads
  • Consumer Organisations
  • Not-for-Profits and Community organisations
• Direct promotion with consumers: You could use social media or posters in waiting rooms or common areas to invite people to make contact if interested in being involved.
• Invitation by community members: Identify people with relationships with community who can facilitate recruitment. They may already have events or forums to meet with community where they can promote you and your project.
• Invitation by clinicians: They may be able to talk to their patients who have finished their treatment journey and want to “give back”. Services could also invite patients to nominate if they are interested in being contacted in future about co-design projects by adding an extra question at the end of local patient satisfaction or patient experience questionnaires.

​Communities that have faced significant inequities may require you to come to them, rather than the expectation that they will come to you. Often, the people you need to hear from most are the most resistant to engagement. Therefore, you need to build sustainable connections with these communities to understand their perspectives and priorities.

If you only engage with communities when you ‘want something’, it will be obvious. Try and develop connections to communities outside of projects to have an understanding. Allow them to be the guide of how, where and when you engage. Let them be the experts and teach you what you need to know. Then, if you think it is relevant to your project, you may be able to progress to flexible engagement in a project as guided by them.

Your team should be diverse and reflect the target group you are co-designing for. Consider diversity across your team in sex and gender, cultural and ethnic background, ability/disability, age, LGBTQIA+. Note: these boundaries are often less clear cut in reality, with individuals often identifying with several groups (intersectionality).

Whilst the Australian community is extremely diverse, consumer engagement and co-design can often only include the perspectives of a small portion of the wider community. Ensuring that you have a diverse co-design team doesn’t happen without deliberate effort, and you should always be thinking “Who isn’t at the table?” and “Who haven’t we heard from?”, and seeking to understand how they want to be involved.

Having someone in your team who is a trusted member of the community being engaged with, allows for respectful peer-engagement to understand broader community needs and priorities. (for example, someone from the a specific cultural group to facilitate engagement with the broader group of people within that culture; likewise for disability, LGBTIAQ+, Aboriginal and Torres Strait Islander communities).

If you are looking for guidance about co-designing with Aboriginal and Torres Strait Islander people and communities, see further advice.

A consumer representative/advisor is a person who takes on a role of representing the consumer voice for an engagement or project, within or on behalf of an organisation. They may be internal to Metro North Health (e.g. a member of the Consumer Advisory Group), directly from the community or associated with an external non-government or advocacy organisation. Consumer representatives are often highly experienced in advocacy on behalf of the community they represent, and therefore usually have strong networks with consumers and communities. They can play a valuable role in co-design by linking you to these communities and helping you to understand the best ways to engage with them.

However, they may not have lived experience with the issue that you are focusing on in your co-design project. Also, given their experience level, it may have been some time since they had their lived experience, and they may have existing knowledge or relationships within the health system that offer them power that other consumers may not have. It would be unwise to only involve a ‘consumer representative’ rather than a ‘consumer/person with lived experience’ in your co-design team, unless they were able to act as a bridge to the lived experience community.

All health service staff and researchers are likely to also be past, current or future consumers of health services. It is important to encourage staff to contribute to co-design as their “whole person”, which may mean bringing their personal or lived experience to the co-design process (see below in “Shared Disclosure”).

However, like consumer representatives, they also have in-depth knowledge of the health system and may need to balance their own needs and experiences with their professional relationships and commitments. Therefore, it would be unwise to only involve the lived experience of staff members or researchers. But instead, invite them to share their lived experience (if they want to do so) along with other people with lived experience from diverse backgrounds.

​People may want to engage or contribute to co-design in different ways, and that is okay. It is important to not assume or prescribe the best way of doing something, but be open to how people can best express their perspective and contribute in a way that is meaningful to them.

To accommodate for diversity of choice, having a variety of engagement methods already available is crucial – formal and informal, varying in flexibility and time commitment.

​Disclosing lived experience is deeply personal, and that should be acknowledged. It should also be acknowledged that staff bring professional and lived experience too. If there is an opportunity, and safe space, shared disclosure can build trust and rapport in the co-design team.

​When engaging people, understand that their contribution has played a key role in the end product – no matter how big or small their role, or when in the project timeline they were engaged. They should feel a sense of co-ownership of what has been developed as a result of the project, and it is everyone’s responsibility to create this feeling for everyone who is engaged.

​This is done through positive follow-up processes: Have we captured your contributions accurately? Would you like to provide additional feedback? Would you like to be engaged in this additional activity?

​And positive follow-through processes: engagement in the ‘Celebration and Share’ stage of the co-design process and ensuring that you do what you say you will do – and if you can’t, engaging them to explain why and come up with a solution together.

​The Metro North Inclusive and Equitable Partnering with Consumers resource includes key information to assist in meaningful engagement including:

• Tips for inclusive engagement
• Overcoming barriers to equitable engagement.
• Examples of engagement in diverse communities.

​Trauma is common in our society, however those with lived experience of illness, hospitalisation and caring – as well as delivering health care – are more likely to have been exposed to a traumatic event in their lifetime. Therefore, it is important for everyone involved to be trauma informed in their approach to engagement and interaction.

​The key principles of trauma informed practice are:

• Safety
• Trust
• Choice
• Collaboration
• Empowerment
• Respect for Diversity

​Some trauma informed resources include:

• Trauma Informed Practice in Co-Design – NSW Gov ACI
• Becoming Trauma Informed Fact Sheet – Blue Knot Foundation

​If you are engaging with lived experience to provide a perspective, you have a responsibility to listen. In co-design, all perspectives are held at equal weighting – however when designing for service-users there are no circumstances where the perspective of someone with lived experience should be dismissed. If you have invested in engaging someone with lived experience, you are committing to investing in making the change they recommend.

You should always consider how you will pay and acknowledge people who are involved in the co-design process.

Depending on the level of involvement, people with lived experience may have a regular paid role (i.e. the co-design co-lead) for a set number of hours and deliverables via a contractor model or appointment to a temporary project position. For people with more ad hoc involvement, you can pay them as per the Metro North Health policy.  In some instances, it may not be necessary or appropriate to pay people for their involvement (e.g. as research participants); in these instances, think about how you can genuinely thank them for their contribution. You can seek advice on payment from a consumer engagement lead and/or an experienced consumer representative.

Acknowledge and recognition for people’s contributions are important to show them that their input was valuable and contributed to the final product or outcome. For your co-design team, you may do this by publicly acknowledging their contribution through authorship on project reports and publications, and inviting them to co-present the project outcomes at internal and external meetings and forums.

You can find out more about funding and payment for co-design here.