Co-design that values lived experience

Co-design is becoming a common practice in health service delivery as organisations and leaders recognise the value of lived experience.

It goes beyond the more traditional engagement methods – involving consumers from the beginning and identifying issues throughout the design of services to ensure the services reflect their needs and preferences for improvement.

Co‑design is important in health services because it challenges the status quo, addresses well-known power imbalances that exist across many levels and ensures the voice of people with lived experience is a co‑driver of change, innovation and leadership.

The evidence shows that using co‑design creates safer, higher quality and more efficient care.

– Living Lab
“Having a voice is important in co-design and healthcare improvement because silence condones. Without a voice there can be no change”.

According to the NSW Agency for Clinical Innovation, co-design is a way of bringing consumers, carers, families and health workers together to improve services. It creates an equal relationship between all stakeholders, enabling them to design and deliver services in partnership with each other.

Planning, designing and producing services with people that have experience of the problem or service means the final solution is more likely to meet their needs.

This way of working demonstrates a shift from seeking involvement or participation after an agenda has already been set, to seeking consumer leadership from the outset so that consumers are involved in defining the problem and designing the solution.

Co-design uses a staged process that utilises participatory and narrative methods to understand the experiences of receiving and delivering services, followed by consumers and health professionals co-designing improvements collaboratively.

Six methods for participation

The National Mental Health Commission has identified six methods for participation. These include:

  1. Formal, one-off mechanisms, such as focus groups, consultation surveys or ongoing advisory groups.
  2. Informal mechanisms, such as casual discussions, online and paper-based feedback tools, which include a patient or carer’s experience of a service.
  3. Brainstorming ideas or discussions around how to develop service or programs during other meetings.
  4. Project-based methods, where people are involved in a working group, or participating to develop a specific project and making decisions around the project.
  5. Technology based mechanisms, including web-based engagement platforms, interactive forums, discussion boards or feedback channels.
  6. Targeted mechanisms to engage with specific groups
  7. to obtain their views and increase their involvement or participation, information sharing, and volunteering opportunities.

Providing different options of ways to be involved in co-designing services will enable better engagement and participation with wider groups of people to receive their views, ideas and expertise.

It is important that co-design is considered in a particular light in the context of health because there are likely to be considerable power imbalances between people with a lived experience of mental health issues and other participants within the co-design team.

People with a lived experience of health issues who are involved in the co-design process often use their own experiences to inform their work. Professionals may not always value lived experience as legitimate knowledge and expertise and may have difficulty learning from them and positioning them as leaders.

– Lived experience
“Personal knowledge about the world gained through direct, first-hand involvement in everyday events rather than through representations constructed by other people”.

Participants of the co-design team need to be sensitive and aware of past traumas that people with a lived experience of mental health or health issues have faced in relation to power and the implications this may have on the individual’s contribution to the co-design process.

Three principles of genuine collaboration

There are three key principles that underpin genuine collaboration between staff and people with a lived experience of mental health/health issues:

  1. Trauma informed

“Trauma-informed services do no harm i.e. they do not re-traumatise or blame victims for their efforts to manage their traumatic reactions, and they embrace a message of hope and optimism that recovery is possible. In trauma-informed services, trauma survivors are seen as unique individuals who have experienced extremely abnormal situations and have managed as best they could”. (Dr Cathy Kezelman)

  1. Recovery-oriented practices

The principles of a recovery-oriented approach include understanding that each person is different and should be supported to make their own choices, listened to and treated with dignity and respect. Each person is the expert of their own life and support should assist them to achieve their hopes, goals and aspirations. Recovery will mean different things to different people.

  1. Value of lived experience

The Fifth National Mental Health and Suicide Prevention Plan reinforces that consumers and carers have vital contributions to make and should be partners in planning and decision-making. This reflects the intent of the national mental health policy regarding consumer and carer participation – that is, ‘Nothing about us, without us’.

The Lived Experience Framework conveys a similar message, arguing that mental health and social services must embrace the participation, influence and leadership of people with lived experience of mental health issues and carers, families and kinship groups in service design, delivery, monitoring, reporting, research, evaluation and improvement activities.

Our difference

At Philips Group, we recognise that a co-design process requires time and effort. Our understanding of the mechanics of co-design allows us to work with your organisation to ensure you are exploring alternative ways to communicate with your consumers and consider how services can broaden the ways in which patients are involved during the co-design process.

If you are seeking help with your co-design process, please contact Group Executive Director Health and Care, Rebecca Williams.