By James Armstrong
Over the last decade, conversations in health and social care about co-production, inclusion and participation have increasingly recognised that knowledge comes from different places.
We often talk about:
Lived experience - knowledge gained through direct personal experience.
Learned experience - knowledge gained through education, training and study.
Expert experience - knowledge gained through practice, professional judgement and application.
This has been a much-needed and very positive move. It challenges the idea that professional or academic knowledge is the only knowledge that matters.
It has helped create space for people that were previously excluded from decision-making. But there may be an unintended consequence that I’ve started to see more frequently.
Rather than understanding these as different forms of knowledge, we sometimes start treating them as different kinds of people.
The person with lived experience.
The academic.
The professional.
The policymaker.
As though each belongs in a separate box. In reality, most people are a mixture.
A recovery worker may have lived experience of substance use.
A researcher may be a family carer.
Someone using a service may have decades of expertise navigating systems and in my experience can often point exactly to where systems can be improved.
A clinician may also be a patient.
The boundaries between different sources of knowledge are often far less clear than we like to think.
A question is whether we have unintentionally taken different forms of knowledge and turned them into different types of people.
When the Map Becomes the Territory
The philosopher Alfred Korzybski famously wrote: "The map is not the territory."
His point, as I understand it, was that any map, category or description can help us understand reality, but it is never reality itself. The Google map of a city on your smartphone is useful but it is not the city, and the blue dot on the map isn’t you.
Similarly a diagnosis can be useful. But it is not the person.
A statistic can be useful. But it is not the community.
Categories are powerful tools because they help us organise complex information. Yet every category simplifies reality. It highlights some features while obscuring others.
Maybe you’ve heard "a person with lived experience" referred to as offering "the lived experience." Or “a professional" described as offering "the professional perspective."
It’s not hard to see how individuals become representatives of categories rather than people with multiple sources of knowledge.
Knowledge Tribes
The language of lived, learned and expert experience was originally intended to broaden participation and challenge traditional hierarchies.
Yet categories can have unintended limiting effects.
When people become associated with a single source of legitimacy, discussions can start to resemble competing knowledge tribes.
"Professionals don't understand."
"Researchers are disconnected."
"People with lived experience are too subjective."
"Academics only care about theory."
Each group becomes defined by what it supposedly lacks and people can find themselves invited to contribute only one aspect of what they know.
The person with lived experience may be expected to speak about personal experience but not systems for example.
Structural Stigma and Forms of Knowledge
Structural stigma is often described as policies, practices and systems that disadvantage particular groups, even when there is no intention to discriminate.
We tend to think about structural stigma affecting people. But perhaps it can affect knowledge too. Historically, many health and social care systems have privileged:
Academic evidence.
Professional expertise.
Lived experience.
In that order.
The growth of coproduction has rightly challenged this hierarchy by highlighting the value of lived experience.
However, there is a danger in simply reversing the order.
If one system says:
Professional knowledge matters most.
And another says:
Lived experience matters most.
The underlying assumption remains unchanged. Someone still has to win. But it’s not a competitive sport. The aim should not be to reverse hierarchies but to move beyond them. Not because all forms of knowledge are identical, but because they answer different questions.
What Gets Lost Through Abstraction?
Korzybski also argued that as we move further from reality, we tend to think at increasingly abstract levels. A person becomes:
an individual,
then a service user,
then a case,
then a statistic,
then a performance measure.
At every step something useful is gained. At every step something important may also be lost. The same process can occur within co-production. Someone may begin as:
a person,
then someone with a unique story,
then someone with lived experience,
then “the lived experience representative.”
None of these descriptions are inherently wrong. But each moves further away from the complexity of the individual. The risk is that organisations begin engaging with categories rather than people. The map gradually replaces the territory.
Who Gets a Seat
We’ve been rightly focused on representation, because it’s important, but a deeper question is:
Does the system know how to integrate different forms of knowledge?
You can have perfect representation and still make poor decisions if people are assigned labels that pre-define the nature of their input. The challenge is not simply ensuring that different groups are present, and they do need to be present, but it’s also important to create environments where different forms of knowledge can interact, challenge one another and inform decisions together.
Healthy systems need constructive methods of including different ways of knowing.
This is understanding how knowledge can cooperate through the integration of lived, learned and expert perspectives, where different forms of knowing inform, challenge and refine one another. Cooperative experience.
A Better Question for Organisations
Instead of asking:
Have we included a lived experience representative?
We might ask:
How is lived experience influencing decisions?
Instead of asking:
Who are our experts?
We might ask:
What expertise is missing?
Instead of categorising people according to a single identity, we might ask:
What knowledge does each person bring?
And when reviewing decisions we might ask:
Have lived, learned and expert perspectives all been considered? Are we co-operating whilst co-producing?
Conclusion: The Map Is Not the Territory
Co-production has helped challenge longstanding assumptions about whose knowledge matters. That progress matters hugely. But if we are not careful, our efforts to recognise different forms of knowledge can unintentionally create new categories that limit people rather than liberate them.
A person is never only their lived experience. Never only their qualifications. Never only their professional role.
The purpose of inclusive systems should be to bring different ways of cooperatively knowing together.
Because the label is just a representation, the map is not the territory and you are not a blue dot.