Right now we are experiencing unprecedented investment in the mental health system in response to unprecedented demand and calls for system-wide reforms. Key reports, including by a Royal Commission and by the Productivity Commission, have pushed the issue up the national agenda and helped shaped the National Mental Health and Suicide Prevention Plan, released in May. Meanwhile, the pandemic and associated lockdowns have put a tremendous strain on mental health across the community.
At times like this it can be tempting to scramble to implement new interventions in order to meet the urgent imperative. However, services designed in a rush are unlikely to meet people’s complex needs.
Instead, co-design is essential for better mental health interventions by developing them in partnership with people with lived experience of mental health issues and the service providers that support them. But who is best to do it? When? And how do they do it safety for everyone involved, in a system that is already stretched? These the key questions that need our attention.
It is not uncommon for activities to be labelled as co-design, when they are really just consultations with service providers. For us, co-design involves providers being willing to relinquish and share power and authority with people who have lived experience so they can co-produce the system, services, products and experiences.
Co-design can be costly and time consuming, and comes with the risk of uncertainty, but as those who use it can attest, the outcomes are a significant improvement on old ways of working.
That is why we recently convened Better Together: Effective co-design in mental health. This virtual roundtable convened government and not-for-profit service providers to share their experiences and explore the potential for co-design. We facilitated the discussion: Tim, a Nous Principal who previously headed the Western Australian Mental Health Commission and who has lived experience of mental health issues, and Kirsty, a Nous Principal who specialises in co-design.
We started by hearing about the experiences of three non-government organisations – one a service provider and the other two being peak advocacy bodies – then the open discussion identified several factors to consider in undertaking co-design in mental health.
We are pleased to share some of the themes that emerged.
To understand more about the importance of co-design and how it works in practice, we invited three leaders with different perspectives to tell us how they have used and experienced co-design.
Dr Leanne Beagley, CEO of Mental Health Australia, said her organisation engaged members with “skin in the game” as partners in developing policies and advising on programs. This included not just consumers, carers and families, but also clinicians, administrators and other providers. She said better-informed design of services was critical for engagement and implementation. Leanne cited an example of building an in-patient unit in Melbourne. Upon its opening, feedback from consumers and carers revealed that they disliked the bright open plan reception room that seemed to put all eyes on new arrivals, and instead would prefer options such as a bean bag in a quiet dark room. Leanne also highlighted the importance of actively supporting people to contribute to the co-design processes.
Nicky Bath, CEO of LGBTIQ+ Health Australia, said her organisation undertook co-design with its stakeholder community, and had experience in co-design with people who use and inject drugs. She explained that co-design was particularly important for marginalised groups, and particularly LGBTIQ+ people, who should not be treated as a homogenous group. Nicky described co-design as time-consuming and multifaceted, and said it led to greater impact and greater return on investment because it ensured the organisation got the service or program right – therefore making the most of scarce resources. Nicky emphasised the importance of setting clear and realistic boundaries for co-design processes.
Gill Callister, CEO of Mind Australia, said co-design was useful in moving away from solutions that might seem obvious but can prove ineffective by allowing a variety of people to bring their experience to create something out of nothing. She cited the example of the rescue of the Thai boys trapped in an underground cave with their soccer coach in 2018, in which people with different skills outside the cave could develop a solution (though in this case, she noted, the co-design did not include the boys themselves). Gill said people often needed to relinquish things or throw away the solutions they bring in because pooling expertise and thought opened opportunities for innovative solutions. Gill flagged the importance of keeping what is at stake at the forefront, of accepting that the process will necessarily generate disagreement, that of understanding that people need to be prepared to give something up along the way.
The discussion revealed several factors to consider in using co-design in mental health.
1. Co-design needs to overcome imbalances in power
People with mental health challenges are a community for which decisions are not always made in their best interests. Prioritising lived experience gives those who have it a power they are otherwise denied. In this way, co-design can give a voice to people who are voiceless. “We need to be able to talk about power and privilege in co-design and to think about our biases,” one participant observed. It is a democratic imperative that we establish mechanisms to listen and act upon the perspectives of marginalised people.
2. Co-design needs to balance lived experience with practitioner expertise
Both lived experience and practitioner expertise are important, so co-design strategies must allow them both to be heard. There were instances cited where providers spoke over the lived experience of participants, inspired by their passion for the topic. The reality of co-design is that not every idea that emerges in the process can be reflected in the outcome. “It’s a tricky balance between art and science,” one person said.
3. Participants need time and space to express themselves
In some cases co-design processes have given people space to voice their frustrations over problems with existing systems. This can be challenging for staff. One strategy to reduce the risk of people being overwhelmed by emotion is to give people the time and space to acknowledge and work through their feelings. As one participant said, “Change happens at the speed of trust.”
4. Engagement is a key measure of success
It can be challenging to assess the quality of co-design. One key metric is the level of engagement – both the number of people who choose to participate and the extent of their contribution. This means lots of disagreement can be a good thing, so long as there are clear rules of engagement. As one participant said: “If my team comes back and says, ‘We did co-design and everyone argued,’ I say, ‘Fantastic, that means they're engaged.’ “ The codesign convenor has a responsibility to ensure people can contribute, including through accessibility tools.
5. There are times when co-design is just not possible
Co-design is great for constructing the long-term design of an invention but is not viable in every situation. The person who is saving your life is not asking you how to do it. You may be asked if you want your life saved – but there are limitations. There are circumstances when the most important people will not be able to participate in co-design.
It was eye-opening to bring together a community of mental health specialists with an interest in co-design. While none of us have all the answers, by sharing our experiences and pooling our knowledge we can learn from each other and develop fairer and more inclusive ways of designing mental health services that will improve people’s lives.
Thank you to all the participants in Better Together: Effective co-design in mental health.
Get in touch to discuss how we can help you use co-design in mental health.
Co-authored by Kirsty Elderton during her time as a Principal at Nous.
Prepared with input from Ian Thompson, Syndi Li Walton and Dan Fine.
Connect with Tim Marney on LinkedIn.