Why LX matters

Why LX matters

The case for LX is practical, ethical and increasingly expected.

Lived and living experience and expertise matter because projects are stronger when they are shaped by the people most affected by what is being learned, designed, delivered or changed.

This is especially important in mental health, alcohol and other drugs, suicide prevention, housing, justice, disability, health and public service reform, where services and systems often make decisions that directly affect people’s safety, dignity, rights, relationships and daily lives.

The case for LX can be made in three simple ways:

1. We have to, because Law, policy, standards, commissioning requirements and public service expectations increasingly require meaningful involvement.

2. It works, because Projects are often clearer, more relevant, more trusted and better able to identify risks when people with LX help shape them.

3. It feels right, because People should have meaningful influence over the services, systems and decisions that affect their lives.

These three reasons overlap. LX is not just a compliance requirement, a design method or an ethical position.

At its best, it is all three.

We have to

In many public service settings, involving people with lived and living experience is no longer optional. Health, mental health, alcohol and other drugs, suicide prevention, disability, justice, housing and social service systems are increasingly expected to involve people, families, carers, communities and service users in planning, design, delivery, evaluation and reform.

In Aotearoa | New Zealand, Te Tāhū Hauora’s Code of expectations sets expectations for how health entities work with consumers, whānau and communities in the planning, design, delivery and evaluation of health services.

In England, NHS statutory guidance on working in partnership with people and communities supports public involvement and describes genuine co-production as people with lived experience working as equal partners alongside health and care professionals to agree issues and develop solutions.

In Australia, national lived experience workforce guidance recognises lived experience workforces as a formal part of mental health system development, with attention to roles, values, professional principles, implementation and support.

Internationally, WHO Europe’s 2025 roadmap on transforming mental health through lived experience offers a structured framework for integrating lived/living experience expertise into mental health systems and workforce.

So the question is increasingly not whether LX should be involved.

The better question is: how do we make involvement meaningful, supported and useful rather than tokenistic, vague or extractive?

It works

Projects are often clearer, more relevant, more trusted and better able to identify risks when people with LX help shape them.

People with LX may help a project:

• understand what things feel like in real life
• identify barriers, risks or unintended consequences earlier
• design services, products, policies or resources that are more usable
• build trust and legitimacy with communities
• interpret findings more accurately
• challenge assumptions and professional blind spots
• strengthen implementation because the work better fits people’s lives, needs and contexts

This is not just a values claim. It is also a design and quality claim.

A 2023 systematic review by Veldmeijer et al. of mental health care innovation found that involving service users and people with lived experience through design approaches can add value, while also arguing that future work needs to involve people as partners and decision-makers and report collaboration more clearly.

This matters because a project can collect input from people and still fail to use it well.

Gathering views is not the same as sharing influence.

The co-production guide by Roper et al (2018) states that co-production can involve people in defining the problem, designing and delivering solutions, and evaluating outcomes. It also argues that co-production raises the bar from seeking involvement after an agenda has already been set, toward consumer leadership from the outset.

From my own 25+ years of experience, meaningful LX involvement is strengthened by early involvement, access to materials in draft form, regular team participation, genuine invitations to contribute, opportunities to shape data collection and analysis, and clear explanations of how input was used or why it was not used.

The same logic runs through the LX Lens: effective LX work is not a decorative extra. It can improve the quality, relevance and usefulness of what projects produce.

But this only happens when LX is designed into the work properly.

Good intentions do not automatically create good involvement. Without clarity, support and accountability, LX can become a tick-box, a late-stage endorsement exercise, or a request for people to share painful knowledge without enough influence over what happens next.

It feels right

LX also matters because people should have meaningful influence over services, systems, policies and projects that affect their lives.

This is about dignity, trust, inclusion and democratic participation. It is about recognising that people are not just recipients of services or sources of feedback. They are knowledge holders, leaders and partners in change.

The co-production guide frames co-production as being grounded in both democratic rights and the unique knowledge and skills of service users. It also names the extreme power differentials often experienced by people in mental health contexts, making power central rather than peripheral.

This is especially important in systems where people may have experienced coercion, exclusion, stigma, discrimination, poverty, criminalisation, surveillance, diagnostic overshadowing, cultural unsafety, service harm, family separation or loss of autonomy.

In those contexts, LX work is not just about improving services.

It is also about changing the quality of the relationship between systems and people.

Good LX work can help projects feel:

• more honest
• more accountable
• more human
• more inclusive
• more connected to real-world consequences
• more able to hold complexity, disagreement and uncertainty

This does not mean LX involvement is always easy, smooth or comfortable. In fact, meaningful LX involvement may challenge assumptions, slow decisions down, reveal tensions or make hidden power more visible.

That is not a failure of the work. Sometimes that is the work.

And good LX work does not guarantee perfect outcomes.

But it can make projects feel more honest, more relational, more accountable and more connected to the people they are meant to serve.