Working together

Orientation and preparation

What is orientation?

All new group members within a team receive an orientation about the group within the health service. This should include an orientation pack presented either online or as a hard copy. The pack will provide you with information related to the organisation’s core values, and the policies and procedures that guide the group’s functions. Common inclusions are the organisation’s framework for consumer engagement, and their commitments to person-centred and family-centred care. Information about the Partnering with Consumers Standard and about partnering with consumers and carers is often provided too. A sample ‘terms of reference’ might be included to outline the membership of the group, and its functions, and key reporting relationships.

Where the group fits within the wider service should be described so all members understand the structures of the service they are in, and how decision-making works.

Clarity of expectations in the lived experience role

What is your purpose for being in the group?

It is important to have an understanding about a group’s expectation for lived experience partnerships and what the group is seeking from people in advisory or representative roles. All members have a purpose for being at the table and providing their perspective. It is important that the group leader lets you know about the purpose of the group and is clear about the role of lived experience leaders. This helps you to think about your own expectations too. When you understand the expectations of the role, this helps you to communicate clearly and with purpose. A similar process occurs for any tasks and project work that the group wants to complete.

What can you achieve in your role?

Everyone on a committee needs to know how much the group can achieve. This helps you to set goals that are realistic and achievable. You might ask yourself “What do I need to do to successfully engage and participate?” This information can be found by speaking to the committee chair as well as your mentors about the role and the ways you can make change. It may be helpful to send some written notes addressing key points to the chair prior to your discussion. What you can achieve will be influenced by the group’s focus and ability to make decisions for change.

How much of my contribution will be included?

Some people enter a group with expectations above what is expected of them. They may wish to tell their story and have this formally recognised. When this is outside the context of the group, people can feel disillusioned because their experiences are not acknowledged as expected. You can clarify exactly what is expected of you and how your views will be recognised early in the process to ensure that you have a clear understanding of the group’s workings.

What are the processes for change?

System processes can take a long time; it often takes months or even years to see any results. Find out about the processes for change in the system you are working within, and explore how long it may take to see outcomes from your contribution. Information should be provided about processes for feedback and communication to update you on progress. Health services need to fund people to ensure that communication and feedback are thoughtful, thorough and timely. Consumer engagement coordinators usually play a key role in this process. However, chairs of specific groups often do this too.

Co-production principles

Co-production is an approach for working together to set the agenda for changes to policy, planning, service design and evaluation. Co-production is about planning activities that value lived experience of services alongside professional knowledge, and works toward practical ways of sharing power in organisational decision-making.

There are three key principles of co-production:

1. Consumers and family/carers are partners from the outset
   • Consumers and family/carers are involved in setting agendas from the beginning.
   • Consumers and family/carers are engaged for their expertise and leadership.
   • All parties have a clear and shared understanding of purpose and share relevant information.
2. Power differentials are acknowledged, explored and addressed
   • Affirmative actions are taken to ensure that consumer voices are heard and influential, and to achieve an equal balance of power.
   • More powerful parties share power to promote consumer voices and priorities.
3. Leadership and capacity of consumers and families/carers are developed
   • Activities recognise and develop consumers as leaders.
   • Resources and opportunities that build capacity and leadership are accessible and shared.

Role of the group leader

How does the group leader support lived experience members?

The group leader or chair requires a good understanding of the role of the lived experience members and provides ongoing support from the beginning of their involvement. Support is offered at regular intervals, and frequent checks ensure that the lived experience members feel engaged, safe and informed. This might be in the form of conversations—at the start of meetings to check in or at the end of meetings for debriefing. The group leader should be approachable and easy to contact before and after meetings.

The group leader can clarify key points from meetings and check everyone’s understandings about what was discussed. Training and supervision might be offered to members; the chair should be experienced in identifying these needs.

The group leader should be inclusive and should support each member to contribute, identifying quiet members who may need encouragement or a different format through which to communicate their ideas or questions.

Open and safe communication can occur when the lived experience member can talk to the chair about what they need to successfully engage with the group.

The group leader validates everybody’s contribution to the discussion and acknowledges each person’s unique experience and knowledge. They also support the value of both perspectives—lived experience and

non-lived experience—and the need for respectful, inclusive communication. In a partnership context, the group leader acknowledges the need for shared knowledge, and that lived experience perspectives express valid points, as do learned experience perspectives.

At times, group leaders may need to manage the behaviour of individuals who behave inappropriately. Clear guidelines should be established for a mediation process within the group. This helps people understand what constitutes inappropriate behaviour, may be inappropriate and that there are mechanisms to support and encourage positive, healthy, safe engagement.

Inclusive and valuing of lived experience perspectives

The problem of stigma and discrimination is still experienced by lived experience leaders in the safety and quality area. This has been reported in the form of being questioned about your background, being seen as your diagnosis and not as a person, having your opinion ignored, feeling devalued, being patronised (“We know better”), seen as a lesser person, and being treated with suspicion: (“Why is this person looking at the service files?”).

Power dynamics operate to shape decisions made in groups, with different members having different levels of influence and authority to their claims. In this guide, we have highlighted the need for understanding power dynamics through cultural safety and trauma-informed care. Both sets of principles encourage members of groups to examine their own assumptions and judgements about the values, knowledge and capacity of consumers, carers, families and kinship groups. They also encourage awareness and reflection on the power that is inherent in health professional roles, and how this power can be consciously shared to create opportunities for people with lived experience, rather than to reinforce traditional roles and privilege.

An example of shared power is to have groups that are co-chaired. These groups have a consumer or carer co-chair as well as a clinical co-chair. Agenda items and the progress of the group are led in partnership. This approach to supporting lived experience leadership empowers consumers and carers in the group and challenges stigma about capacity and knowledge. It also builds capacity and skills.

How do we become more inclusive and respectful of one another?

This guide highlights qualities and practices for successful group partnerships:

• Ensure that lived experience advisers or leaders are involved from the beginning to end and not in an ad hoc manner.
• Communicate working documents in a timely way, including offering to print and courier them to members.
• Acknowledge and respect the unique expertise of lived experience leaders and their contributions to safety and quality.
• Listen to what is important to everyone and encourage mutual respect for all members.
• Acknowledge power imbalances, and support ways to enhance lived experience voice and leadership, and increase member numbers.
• Let people know they are being helpful—not everyone knows if their participation is valued.
• Be collegial and remember the person behind the role.
• Be committed to learning from consumers and carers, and working within the spirit of shared learning and partnership.
• Reflect on, and discuss, the benefits of partnerships as a group.
• Avoid using jargon and acronyms that exclude lived experience participants from understanding and thus contributing.

An example of effective group leadership

A Local Health Network sets up a project group to identify improvements for the mental health inpatient unit at the regional hospital. To provide a more welcoming environment, facilities and practices on the ward need reviewing, as do safety and quality. The review also aims to find ways of increasing comfort and reducing conflict between staff and consumers.

Eight members of the region’s consumer and carer reference group are invited onto the project; six clinical leaders are also involved. At the first meeting, the group leader wants to establish an inclusive culture for the group and acknowledge lived experience leadership. She:

• gives an Acknowledgement of Country for traditional owners
• acknowledges the Aboriginal people present
• acknowledges the people with lived experience, and recognises how their experiences and insights inform the work of the group/organisation/sector
• conducts an introductory round of members
• raises the importance of lived experience contributions and leadership to the project
• acknowledges that inpatient units can be places of traumatic and difficult experience for consumers, and the significance of diverse consumer perspectives for defining safety in these contexts
• works with the group to identify everyone’s values for working together. These values are written on coloured A4 sheets of paper and put on the wall for reference
• speaks to the values, noting that conversations may reflect different perspectives on power and safety, and that lived experience can and should challenge the thinking and routines of the health service. She emphasises mutual respect
• works to encourage voice, and how shared awareness and knowledge come from working together.

Language and communication

Language and acronyms used by clinicians and service managers can be difficult to decipher by anyone who does not usually work in the health sector. Foreign terms and words are used to describe common diagnoses, treatments and interventions, as well as other aspects of the safety and quality area. There is ‘assumed knowledge’ among health professionals, which must be identified and discussed within the principles of conceptual competency and sharing power with lived experience members. Using conceptual competence is the ability to see the big picture goal and provide leadership and direction to work towards achieving it. Equally, lived experience members may use language from consumer and carer knowledge frameworks and projects that needs to be explained to health professionals. Developing health literacy happens over time with ongoing involvement, but often people need to know the meaning of common terms used in meetings. All members must have access to information and education about the topics being discussed, and their context. Services need to provide lived experience members with information to ensure that they are well informed about the context of the group and therefore can contribute meaningfully.

Use of acronyms and medical terminology should be minimised to ensure that everybody at the table understands what is being said.

Contact person

One person should be identified as the contact person for lived experience members. Members can ask the contact person questions about the content of the meeting and clarify points. The person could be another member of the group, or the chair. The contact is vital for encouraging members of vulnerable communities to connect and have a positive group experience. A contact person needs a strong commitment to ensuring that the voices of consumers, carers, families and kinship groups are supported and heard. Additionally, they should ensure that any payments for participation and reimbursement of expenses are progressed in a timely manner.

Contact details of all people on the committee should be distributed via email to provide a communication channel for all.

Collaborative and strategic approaches

Taking a solutions approach with positive communication promotes collaboration between service managers and lived experience leaders. Ideas in the form of positive suggestions and ways to improve safety and quality from a consumer or carer perspective are encouraged. This should be balanced with awareness about the best ways to achieve change, given the various interests affecting health services.

Transparency and feedback about outcomes

Feedback loops are critical ways to let people know they have been heard and their ideas are taken seriously. Often people report not knowing what has happened to their contributions after engaging with a committee. Changes in system processes within the healthcare system often take months or years, and can leave people wondering whether anything has happened. People like to know if their contribution has been helpful or useful to the project. Providing feedback and updates to all members of a committee lets them know they are being listened to, and valued. Feedback is a central feature of accountability.

Pathways to communicate information and give feedback to members across the life of a project include email, phone, meeting minutes and face-to-face discussions. Groups should consciously plan how communication and feedback will happen across the life of the group or project, and then follow through on these commitments. This is an important part of accountability. Executive-level feedback and reflection help members to understand the impact of their contribution.

Reflecting on contributions

Health service leaders should provide a clear communication pathway for lived experience members to provide feedback to management about the partnership experience. This allows opportunities to discuss any barriers to engagement, or other aspects of group membership. Group leaders can check in with lived experience members in ways and on terms predetermined by the member—for example, at the start, during or after meetings. The check-in could occur in a one-to-one setting or with other members present. Either way, the lived experience member must be provided with appropriate support in a comfortable context to communicate any concerns about their role, the group environment and the outcomes of decisions.

This process also enables group leaders to offer feedback about your and others’ contributions to the meeting, and the effects of the contributions. This is an important process.