​​This page has information for people leading and taking part in engagement activities.

On this page

What we mean

We* value lived and living experience [1][2][3]. We're curious about what recognition for time means to the people we're engaging. We do financial and non-financial recognition. Our payment processes are prompt and fair [2]. Recognition might mean:

  • payment and out-of-pocket expenses (for example, parking)
  • public, group or community recognition
  • developing new skills (such as facilitation and leadership)
  • presenting or writing things together
  • a character reference for a job or scholarship
  • nourishing food
  • something else.

Without recognition

Only recognising people in ways that don't involve money can limit participation and work against diversity and inclusion. Health Consumers Queensland points out: 'When consumers are not paid, you will only attract consumers who can afford the time and expense of taking part' [4]. This often leaves out people with caring responsibilities, casual workers who need to take time off work, people on a low income and others.

What to expect: consumers, carers and communities

As consumers, carers and communities, you can expect to:

  • know up-front how you'll be recognised – so you can decide if you want to take part
  • be valued equally to others in the work – no matter your employment status, education or identity
  • be offered choices about recognition
  • be paid a fair and reasonable rate for your time [2], if you choose to be paid
  • respect others' preferences and needs for payment
  • see your input acknowledged and be thanked for your input
  • have options to present work you have led or contributed to – and in ways that respect your preference (for example, for pre-recording something, not doing it live) [5]
  • be invited to celebrate something you helped with.

What facilitators and meeting chairs can do

Here are some actions you can take across the engagement process.

When planning:

  • identify your own beliefs (for example, who should be paid, who has valuable expertise)
  • think about what you're asking people to do (for example, sharing traumatic experiences)
  • consider if you're consulting or co-designing [6]
  • if you're co-designing, you'll involve consumers, carers and communities in making things and making decisions (where possible and legal)
  • don't say you're co-designing if you're not
  • be honest about what you're doing
  • include consumer payment and other expenses (such as food and venue hire) into your budget
  • talk to consumers, carers and communities about what recognition means to them
  • give choices about recognition
  • be flexible where you can (for example, if someone suggests something you hadn't thought of).

When inviting and supporting people to be included:

  • be honest about what recognition is on offer in your project or committee
  • be honest about how and when recognition will be done
  • explain any limitations on recognition or payment processes and why [5].
When doing and deciding:
  • start slow - build relationships and trust
  • make agreements on what is and isn't okay
  • understand and respect Aboriginal cultural protocols and ways of being [7][8]
  • consider options for consumers, carers and communities to present work they have led or contributed to [5]
  • consider how to make those opportunities inclusive, such as pre-recording something instead of doing it live
  • recognise the contributions of consumers, carers and communities in the work itself. And also when talking about the work in meetings, reports and presentations [5]
  • plan how you'll celebrate the work that's been done with the people who helped
  • make time for grief and disappointment if the work didn't turn out as hoped
When reviewing and learning:
  • make sure people were recognised for their time
  • ask for feedback – for example, did the recognition feel fair? How else could have been done?
  • use what you hear to build your practice and improve next time.

What's not okay

What's not okay is:

  • expecting, recommending or coercing consumers, carers and communities to volunteer their time
  • assuming consumers don't want to be paid if you haven't asked, or because you don't want to be paid
  • overlooking the time people spend preparing for meetings or reviewing things out of session
  • waiting for consumers to ask for recognition before offering it
  • ignoring the power differences that can stop people from asking for recognition.

Resources to support you

References

  1. Agency for Clinical Innovation NSW. (n.d.). Putting the person at the centre of innovation. [online].
  2. Consumer Leaders in Health Collective. (2022). Statement of Aims. Unpublished.
  3. New South Wales Health. (2022). Future Health: Guiding the next decade of care in NSW 2022-2032
  4. Health Consumers Queensland. (n.d.). Recruiting: Paying consumers.
  5. The Mental Health Complaints Commission. (n.d.). Lived Experience Checklist.
  6. Agency for Clinical Innovation NSW. (n.d.). Partnership Foundations [online]
  7. Agency for Clinical Innovation NSW. (n.d.). Working together with Aboriginal communities
  8. Emerging Minds. (n.d.). Principles to practice: Beginning to see the door

*We: Includes consumers, carers, staff, volunteers and anyone else working in local health districts (LHDs) and specialty health networks (SHNs), at the Ministry of Health, across the NSW pillar agencies and other NSW Health organisations. The use of this language is deliberate to show the collective effort required by all of us.


Contact page owner: Patient Experience