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

On this page

What we mean

Decisions that impact consumers are informed by consumers. We acknowledge historical and current power differences between organisations and communities. We partner in the planning, design, delivery, measurement and evaluation of care [1][2]. Sharing power can be:

  • collaborating with consumers, carers and communities to plan and lead engagement (for example, choose methods, write objectives, set agendas, choose who to include and invite, pick places for engagement to happen)
  • acknowledging your identity and the power you have compared to other people involved
  • making space so consumers and carers share their own stories
  • making sure everyone involved has the knowledge they need to participate
  • deciding together what gets shared and how (for example, research insights, recommendations, stories)
  • acknowledging whose experience is seen as 'most legitimate' and work to change that
  • being led-by Aboriginal cultural protocols and ways of being [3][4]
  • engaging consumers, carers and communities as peer researchers or community researchers
  • co-presenting stories, research insights, plans and strategies. [5]

Without power in partnership

It's difficult to reach higher levels of participation [4] without sharing responsibility and making decisions together. If we don't share power, our work can feel like power over, which isn't empowering. This can damage relationships and make consumers, carers and communities not want to share their insights or ideas.

What to expect: consumers, carers and communities

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

  • be valued equally to others in the work, no matter your employment status, education or identity
  • be involved in decisions (for example, deciding on methods and research questions together, naming research insights and actions, and presenting the work together) [3]
  • hear if you have options to take on more responsibility – and what support is available to do that
  • have information to make decisions about the thing you're working on (such as a new building or service).
  • have facilitators and staff be genuinely interested in your ideas and suggestions
  • have staff see your input as having a positive impact
  • have time to build connections with other consumers, carers and community members
  • know how you'll be recognised, to be able to decide if you want to take part
  • have decisions explained.

What facilitators or meeting chairs can do

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

  • Use the Plan questions and Essentials checklist.
  • Involve consumers, carers and communities from the beginning.
  • Think about the power you have. You might have power in your role, access to information, safety or relationships other people don't have. You might have privileges based on your identity, such as whiteness, being non-disabled or being cisgender [5]. How could the power differences between you and community members impact the work?
  • If you're not connected to, or a part of, the community you're working with, consider facilitating with someone who is.
  • Find places to share responsibility for designing and leading engagement activities.
  • Know if you're consulting or co-designing or something else [4].
  • If you're co-designing, involve consumers, carers and communities in making things and making decisions.
  • Don't say you're co-designing if you are not.
  • Be honest about what you're doing.
When inviting and supporting people to be included:
  • think about how to prepare staff to share power with consumers, carers and consumers
  • take steps to address power differences, such as inviting equal numbers of consumers and carers to staff
  • be honest about the rules that will impact ideas (such as law, branding or budget)
  • don't assume people don't want to take part because there are limits or rules
  • make sure there is diversity in the room. This so marginalised people (who are often isolated in groups) are safer
  • notice where people might need more support so they can contribute more to decisions.

When doing and deciding:

  • start slow - build relationships and trust
  • make agreements on what is and isn't okay
  • be honest about when and why decisions can't be made by consumers, carers and communities
  • notice where you're taking on all the decisions. Where could you share responsibility?
  • notice if communities are being talked about and are not in the room - then, do something about that
  • have people share their own stories, if they want to.

When reviewing and learning:

  • ask for feedback - did the project feel like power to, power-over or something else?
  • use what you hear to build your practice and improve next time
  • for co-design [4], review if you met your goal for higher participation
  • know that while you might think you did co-design, the people involved might not.

What's not okay

What's not okay is:

  • thinking power differences don't exist because you don't notice them
  • having very few consumers, carers and community members – whose voices are overpowered by staff
  • allowing powerful individuals (staff and consumers) to dominate conversations and decisions
  • being dishonest about the project and its constraints (such as time, funding, law, budget)
  • being dishonest about the kind of influence that consumers, carers and communities can have
  • only involving consumers in low-stakes decisions such as brochures, artwork or curtain colour
  • asking people to make decisions without giving them equal access to information and time to reflect.

Resources

References

  1. Australian Commission on Safety and Quality in Health Care. The NSQHS Standards: Partnering with Consumers Standard
  2. New South Wales Health. (2022). Future Health: Guiding the next decade of care in NSW 2022-2032
  3. Agency for Clinical Innovation NSW. (n.d.). Working together with Aboriginal communities
  4. Emerging Minds. (n.d.). Principles to practice: Beginning to see the door
  5. The Mental Health Complaints Commission. (n.d.). Lived Experience Checklist
  6. Agency for Clinical Innovation NSW. (n.d.)
  7. Transhub. (n.d.). What does cis mean? [online]
*We: Any reference to '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.

Current as at: Tuesday 6 August 2024
Contact page owner: Patient Experience