I’ve been thinking a lot about what we mean by co-production and co-creation in policy, research and product development. What do I, as an AAC user, need and want from things that directly affect me? What does this mean for decision-makers, researchers and AAC designers and developers, and how we work moving forward? Plus, why it doesn’t always happen, yet the positive benefits for everyone when it does.

What do we mean by working with AAC users?

This starts by defining what we mean by co-production and co-creation of policy, research, and product development.  The terms we hear bandied around include participation, consultation, collaboration, co-production and co-creation. For me, these are not interchangeable; they have different meanings.

Consultation:

Seeking the feedback and views of someone whose life is touched by a topic or experience.  For instance: visiting a public toilet and being asked to press a smiley or frowning face on the cleanliness of the facilities. Or receiving a text survey about a service visit or ticking a sheet after visiting the hospital. This might even include a public consultation, such as publishing proposed guidance without working with us beforehand.

Participation:

Active engagement in a process, being asked for an opinion or view of something meaningful to the individual.  For instance:  Would A or B work better for you? Or, we are thinking of doing X, Y or Z; which would you prefer? Of course, the questions might be more in-depth, but in reality participants comment on options a project lead has already developed or considered.

Collaboration:

This is a more meaningful activity. Individuals with lived experience contribute to a discrete phase or stage of a project, sharing their views during a step of the design or research process.  Recruitment of individuals with lived experience usually begins once funding is in place. This means the overall parameters for the project are set and collaboration is on specifics.

Co-production:

Individuals with lived experience are active co-researchers throughout the project. As full members of the project team for some or all stages of the process up to and including dissemination. They may advise on methods, take part in data collection and analysis, sense-check results, and so much more.  They have a seat at the table, their voice is heard in every decision, and their input is valued throughout.

Co-creation:

This extends to active integration within the policy, research and design team from concept through evaluation.  Research and product development is guided by the reality of lived experience, focused on what the end user wants or needs, and why.  Co-creation is baked into the process; it is not just having a seat at the table on a live project.  This means identifying a need, working with the project team throughout the process, and evaluating the evidence of impact and the project’s economic return.  Done well, this approach supports the delivery of high-quality, impactful outcomes.

Just a point to think about.

If you have a project, policy, or product that also directly affects families, professionals, or others who support the AAC user, you should also consider their needs and work directly with them.

What stops this happening?

Many factors can stop co-production in policy, research or product development from getting off the ground. Even once a project has begun, some factors can stall the process. These seem to fall into cost, time, resources and attitude or perceptions.

Power imbalances are frequent in research and product development.

Sadly, some people believe expert professional knowledge can trump lived experience expertise.  But unless you have walked in the shoes of an AAC user, how do you know what they actually need?

Participation and consultation approaches are often box-ticking and tokenistic exercises.

Sometimes the same small group of willing participants are approached to take part; it is easy to go to people you know over and again. Yet this can lead to a narrow or fixed viewpoint and, over time, participant fatigue. The researcher or developer might say they have the views of individuals, that their ideas are the right ones, but this is only at a superficial level. If we think about it, when we offer options, we restrict real choice; what if the answer is not A or B but, in fact, G, a factor not on your radar!

Active engagement in research and product development is often seen as too hard or too difficult to achieve.

There is often stigma around empowerment.  This may be because individuals are seen as too hard to reach, too challenging to involve, or too time-consuming to include. It might also be easier to talk to a proxy, such as a family member, than to seek the individual’s views. Let’s consider: would you, as a researcher or designer, want your parent or a colleague answering questions on your behalf and guessing what you want?

What exists is good enough

Sometimes we assume that when a mainstream toolkit or strategy exists, it’s good enough. But what has been created and used for the general population may need adjustment for more vulnerable groups. This includes AAC users.  If we reflect on current NHS mental health strategies, we can see how mainstream solutions may not work well.  The focus on talking therapies, building relationships and giving back. In my opinion, this will only work in some situations. But what it does need is for the professional to be a trained AAC communication partner

What does policy actually mean?

Often in education, health, and care settings, policies state that individual voices should be heard, or that AAC users should be consulted. But what does this mean?  Without specific guidance, national policy risks being interpreted differently at regional and local levels. Until research funders and product developers have policy that puts the user at the centre of decision-making, can they understand the benefit of ensuring lived experience experts are active co-producers in research and product development projects?

How do research and development teams measure success?

Do we simply count publications or units sold? Does the developer priority list reflect the needs of AAC users? Do research and product teams understand the evolving profile of lifetime AAC users and their expectations? Is the development team on board with the push to teach literacy to all pupils, whatever their label or diagnosis, and do they understand that AAC is an alternative pen to access learning?

The economic evaluation of any project is important

The big question is always: was the money well spent? Were the outcomes achieved? There needs to be a balance between offsetting the cost of involvement of AAC users and the additional benefits achieved. Whilst the project may take longer and there will need to be more resources, consider the benefits if we actually knew:

• How adult AAC users actually learned to use AAC and become literate.  Did they learn the same way as typical peers? What was different? What worked for them, and what did not? AAC is still an immature field, so it is even more important that we all understand what has worked for ‘successful users’ and why.
• If we assume the ultimate goal of developers and suppliers is sales, do we truly understand why people buy a particular product and how they use it? Have developers asked AAC users why users lose motivation? What may seem like a little detail to a developer can be a huge frustration for an AAC user when software doesn’t perform as needed. When technology performs as expected, meets the user’s needs and can grow with them, then the biggest ambassadors for any product are its satisfied users.
• With an increasing reliance on AI, what does this mean for AAC users? My blog on techno-ethics, AI, and AAC outlines the risks of excluding AAC users from policy and design processes to comply with the recent EU AI legislation (2026).  An EU developer or supplier will want to avoid the risk of falling foul of the law by failing to protect vulnerable people who use AAC when AI underpins LLMs and word prediction. The simplest way to safeguard against these risks is to understand what happens without active engagement from AAC users and to ensure co-creation and co-production of corporate policy and technology development with AAC users.
• We need unbiased, impartial research on what AAC users want and need from their devices. Good ideas are not the preserve of one person or one company.  If AAC users are to be equipped for our changing world, then we must all understand those needs. But we must also promote and protect AAC users by levelling the playing field through having a community-wide policy and ethics around how research and development are approached.
• AAC users need to be respected for their knowledge.  It is easy for academics or developers to ask questions and take up an AAC user’s time.  The professional is doing it because it is their paid job. But what is the consequence for the AAC user of giving away their ideas and opinions for free?

So, what now?

As an AAC user, I want to belong in the AAC community, to feel connected to others who share my passion for empowering AAC users, and to feel valued.  We can speak up, write blogs and make presentations, but to change the status quo, we need your help.  We need policymakers, researchers and product development teams to listen and understand our needs.  It is important to get things right from the start by taking AAC users seriously. We need everyone to have an open mind and to recognise that lived experience and practical expertise using AAC 24/7 can trump professional knowledge.