The slogan “nothing about us without us” is a message that gained early prominence in disability activism in the 1990s and has since been used as a rallying cry across many different disciplines. The core is the same: any decisions about a particular group (such as people living with HIV/AIDS, women, or aboriginals) should be made with the full participation of members of that group.
Beyond being an underlying principle for the fight against oppression, the phrase “nothing about us without us” can be translated to a number of different scenarios whereby a group of people is being “served” or “guided by” individuals lacking lived experience, who do not take the group’s opinions into account. Take for example, a women’s empowerment organization governed solely by men or a new immigrant integration policy that is made without input from any immigrant voices.
While these examples may seem unsettling, they are in fact the norm. And nowhere is this more evident than in the health and human services field. Here, the dominant model is a dichotomy between “provider” and “user:” users seek a service because they are in need, while expert providers are there to care for and serve them.
Unfortunately, users are rarely asked to give their opinion on how services could better meet their needs, let alone given the opportunity to provide their own input into problem-solving or share their knowledge to help others. But what if things could be different? What if we turned this model on its head and used the notion of “nothing about us without us” to guide the integration of service users into the design and delivery of services?
Co-production is a model that proposes just that. This innovative approach values professional experience and lived experience equally, by designing and delivering services in true partnership between citizens and professionals.
Imagine a diabetes service that not only offers professional support to help deal with medical concerns, but also facilitates meaningful ways for people with diabetes to support each other in managing their illness through diet and exercise. Healthcare providers often field questions about diabetes-friendly meal planning or how to talk to kids about having needles in the house – concerns that are prime for discussion by a group of peers, giving providers more time to focus on issues of a medical nature.
More than just a theory, co-production provides a framework that helps us understand whether users/clients/citizens are being meaningfully heard and included. Take youth engagement in mental health as an example. Many mental health agencies will say that they practice youth engagement, citing examples such as a young person on their board, a youth advisory committee, or consultations with youth when making decisions. What this often looks like in practice, however, is a young person sitting at a board table as a token member whose voice is overlooked; a group of youth who meet once a year to give opinions that are not adequately taken into account in decision-making; or young people being offered the choice between the red version or blue version of a pamphlet.
In contrast, co-production approaches help improve health and social services through engagement, which is especially important in the youth mental health context. Many young people don’t access mental health services because of stigma or fear of labels. Moreover, many of these services do not provide a welcoming environment for youth or are not designed in ways that helps overcome these barriers. We know that youth engagement is effective at addressing these issues and co-production offers a model on how to engage youth (users) in a more meaningful way.
When young people have input into the design of services, those services become more youth-friendly, accessible, and inviting. This can be as simple as providing service hours late into the evening, creating a meeting space with comfy sofas, or providing non-traditional mental health services that incorporate music, technology, or exercise. One of the most important connections between youth mental health services and co-production is the example of peer support.
As many as 80% of youth are more likely to talk about their mental health issues with a friend or peer than an adult or professional. Recognizing this, mental health agencies could more effectively serve youth by: enabling workers to provide coaching and training to young people on how to support each other; starting peer support groups where young people share their issues with a professional standing by to provide expert input or facilitation if needed; or simply creating the space for young people to interact with each other beyond their individual clinical sessions, so they can feel less alone.
The benefits of a co-production approach in youth mental health are many:
Better provision of services:
Many well-meaning adults believe that they know what youth want. In many cases, however, they don’t. If you want to tailor services to the needs of youth, you have to ask them what they want and invite them to help design the solution. Doing so will help youth mental health agencies make better use of their resources and increase their impact.
A system that is entirely dependent on professionals providing one-on-one services to users is not economically feasible or sustainable, especially considering that one in five Canadian youth is dealing with a mental health issue of some kind. Positioning professionals to provide expert services when deemed necessary and appropriate, and to act more as a facilitator or coach when youth are better able to help each other, is more cost-effective and enables the system to reach more young people than the status quo.
Improved outcomes for youth:
Evidence shows that therapeutic alliance – individuals working in partnership with providers rather than as passive recipients – results in better treatment outcomes for youth and promotes help-seeking behaviour. Youth also report that being engaged improves their overall mental health by helping them build positive relationships with adults and develop feelings of self-worth and identity.
In any move towards co-production, it is important not to throw the baby out with the bathwater. Greater participation and inclusion of people with lived experience is key, but shifting to a completely user-driven and user-facilitated model is not the goal. Doing so can marginalize services, rather than improve them. The goal is a happy medium: providers and users working together in partnership, neither one disregarding the other.
Though co-production is gaining traction in the UK and other parts of the world, it is relatively unheard of here in Canada. Do you know any examples of co-production in action or opportunities where co-production might be introduced into Canadian systems? We’d love to hear from you.
For more information on co-production, check out our co-production page or download this resource to share with your community!