clearer about ‘lived experience’
It’s often not clear what people mean by ‘lived experience’.
It’s mostly not used in everyday conversation, and some people felt it was a posh, distant word. But it’s used a lot in academic journals, where it’s rarely defined; it’s often simply assumed that everyone knows what it means. This is particularly the case in social policy and sociology. 1
One speaker did however define lived experience directly. They said it meant raw, direct feelings & thoughts (rather than claims about causal processes), and 'lived' means the passage of time (not one-off snapshots). And it’s often used in the context of treating people's experiences as credible and authentic.
There are completely different things that ‘lived experience’ means.
People sometimes divided this up into two opposing ways of doing things:
● ‘Passive’ (normal qualitative research) vs. ‘active’ (bringing lived experience into deeper parts of doing research). There was a lot of discussion about the way that qualitative research was sometimes labelled as ‘lived experience research’, confusing it with deeper ways of engaging with lived experience. (Some people suggested it was a particular type of qualitative research where people are presented as ‘speaking for themselves’, without an explicit academic researcher-led way of analysing it). But this confusion is not a new problem.
● ‘Co-production’ was sometimes felt to be clearer, but there’s still different things that this means too. It can be ‘transformative’ (equal involvement, people are given voice, and what they say is acted upon) vs. additive (lived experience is added to the policy process, but no real transformation of power).
The different things that we discussed on the day are slightly different for different meanings of ‘lived experience’ - and this is important to bear in mind.
Lots of people said that they didn’t want a ladder showing better/worse ways of involving lived experience in research.
Lots of people said they didn’t want to say that some approaches are always the ‘right’ or ‘best’ way of doing things, because what is ‘right’/’best’ depends on what is appropriate in each context. Sometimes there are good reasons to do research with less involvement, and people don’t always want to be involved on the deepest possible level, particularly given the practical and emotional demands that are noted below.
It’s worth adding though that some people did like the idea of ladders, which are crude, but help clarify what’s missing and can drive people towards deeper co-production.
But nearly everyone felt that it’s really important to be clear about what you mean, otherwise you end up misleading people - which feels like tokenism.
Everyone is aware of how blurred this can be, and wants help in disentangling them. Some sort of tool that sets out the different meanings of ‘lived experience’ was felt to be helpful by several academics/funders. There is some work out there on this, and one speaker showed a scale they’d developed with four different ways of doing things (rather than just two) - but either we need to develop this, or we need to better-publicise the scales that exist.
There were different views about whether to keep talking about ‘lived experience’ at all.
Some people thought that it’s a necessary word - it signals certain things, and it’s hard to know what
1 Other disciplines like critical legal studies, education, and geography seem to make more of an effort to define it, because what they’re studying forces them to be clearer - they are more likely to be studying experiences (emotions, identity, relationships) directly, so need to be clear about what they’re doing, e.g. Kallio et al 2023 on ‘lived citizenship’. Social policy/sociology papers instead are focused on policy, where talking about ‘lived experience’ is a way to look at the impact of policy on people’s lives.
other term could be used in it’s place (though it has to do a lot of heavy lifting). Other people were less convinced, partly because it means so many different things that it’s getting confusing.
Deeper co-production in research
Lots of people talked about ‘tokenism’. Sometimes this happens where experts by experience feel misled by research partners.
This could happen when people were invited into a project on the basis of their lived experience, with the promise of having some genuine power over how the research went, but found that their participation was limited. (There’s also another way people talked about ‘tokenism’, which is discussed below under ‘power and social change’).
Deeper forms of involving co-production in research look at all stages of research.
This includes at least three things: setting the questions, doing the analysis, and communicating the findings:
1. Setting the questions: deeper co-production includes experts by experience in designing the research questions. This is partly because people sometimes have a desperate desire to be asked a different question from the one they keep being asked, as some questions are ignored by the academic researchers that usually have the power.
2. Data collection: one person mentioned that deeper co-production involves experts by experience in collecting the data; though this was mentioned less often than the other stages.
3. Doing the analysis: deeper co-production includes experts by experience in analysing the data. This not only changes power relations, but also helps ensure better understanding (e.g. when DWP asks people who are sick/disabled whether they want to work - which is misinterpreted as being about people's ability to work). However, one person said that the analysis is often where involvement drops off. We need 'lived analysis' (rather than just 'lived experience') - otherwise we’re simply creating a load of data for researchers to delve into.
4. Communicating the findings: deeper co-production includes experts by experience in communicating the findings, making recommendations, and trying to influence policy. People said a lot about this, so this is covered in detail in the next section on power and social change.
In all of these, it can help to give clear feedback of how things changed as a result of involving lived experience. One team talked about formalising this in 'You said - we did' feedback loops.
Just to repeat what was noted above: deeper co-production is not necessarily ‘better’, as it’s about what is most appropriate in each context. But if a researcher says they’re going to involve lived experience on a deep level, then they need to think about all of these things.
It’s also important to be clear about what professional researchers can bring.
Where professional researchers are working with experts by experience on a deep level, they need to be clear on what value researchers bring and what their role is (not just focusing on the role and value of experts by experience). We’re not very good at explaining what these are, and it would be helpful to do this better, though some successful projects did this well).
Experts by experience mentioned several things that they really valued when working with academic partners:
● Getting funding to answer a question: it's hard to put in bids with funders if you're not an academic, and even if you do then you need further funding when the project ends, so this usually requires collaborations with academics. This requires long standing trusting relationships - so we need to think about how to make spaces for people to meet each other.
● Day-to-day running of projects: it’s hard to run a project if you have a fluctuating illness/disability, and it’s great to have some other people who can help support the project.
● Research skills: academics have had the opportunity to develop research skills, and experts by experience usually have not - so it’s great to use these skills in collaborative projects, as well as to give opportunities for experts by experience to gain these skills (see also below).
The foundation of deeper involvement is the motivation of the people in control of the project.
One thing that leads to tokenism is a misunderstanding about how deep the involvement of lived experience is going to be in a project (see above). ‘Tokenism’ is not about how deep a project is trying to be (because different levels of involvement might be appropriate); it’s about claiming to do a deeper level of involvement than you actually deliver.
Part of the problem here is that deeper forms of involvement are transformative: they involve sharing power, and moving both academics and the third sector away from the traditional charity model of antipoverty campaigns. And the mild language of ‘lived experience’ and ‘co-production’ can sometimes hide this. If funders are going to require a deeper involvement of lived experience, they need to make clear that this means disrupting the traditional way that power works, within a well-meaning but not very democratic sector. It’s not just a small add-on to a traditional piece of research/policy work.
This all requires making an effort to make spaces inclusive. Academic spaces can be intimidating for non-academics - the physical set-up of the room, the way people stand and deliver presentations at the front (while everyone else sits statically), the sometimes aggressive way that people ask questions etc. A lot of this probably needs challenging if we want to create inclusive spaces. The resulting spaces can be messy as they involve different languages, experiences and understandings, but are an important part of allowing people to properly listen, discuss and connect. (Kate and Ben are asking separately for your reflections on how far the workshop itself achieved this, and how we create better spaces in future).
But motivations also matter. Academics that are motivated solely by box-ticking in order to get funding are not going to achieve a deep involvement of lived experience, and are much more likely to end up claiming more than they deliver and therefore feeling tokenistic. Academics who are more committed to transformative ways of working may make mistakes or communicate things badly, but they are much more likely to listen to the people they work with, and make things work better. Indeed, some of the academics at the workshop talked about their own journey of changing their practices when people challenged them.
But there are things that we can do to make good motivations more likely.
1. Funders can support or require more equitable collaborations, rather than mere tick-boxing. Someone added a helpful further thought after the event: funders often want academics to collaborate with external partners. But the idea of using research funding to properly resource a grassroots organisation to be able to play an equal part in the research doesn’t seem to exist. At best the organisation gets a payment that pays for say half a day of their time every couple of months, but that tends to result in tokenistic involvement, not a more radical collaboration where the lived experience partner gets to co-design the research.
2. Academic researchers can work together to create a culture of doing things differently. For example, a group of early career researchers have created a manifesto of how they want to do collaborative research.
3. Partnerships could be set up. For example, academics could go into their local communities to meet people who might want to work together on something. And a user-led think tank is being set up, with deaf and disabled people thinking of priorities and then doing speed dating to match them with researchers who could help them take this forward, flipping the power dynamic.
4. Training/skills development for experts by experience could be made more widely available and supported (e.g. through payment for the time involved, though without any pressure to do this), e.g. how to write blogs, how to speak to people in our communities. This will reduce some of the differences in power/skills within research and policy work, that helps increase mutual respect and make deeper levels of involvement a bit easier.
Power and making social change
‘Tokenism’ was also about a promise of power and working towards real change, which was then not delivered.
Many people said that there were times that they felt let down or patronised at policy events. This could be being invited to come to an event, but given little or no time to speak; or allowed a chance to speak but with no follow-up questions or conversations, making people feel that no-one had been listening, and this was pure tokenism. This felt worse than not being involved at all - people put in lots of time, effort and emotional energy (see below), and it obviously didn’t feel good to feel that this had all been wasted. These experiences pushed people away from doing it again.
This connects to the previous point about what it looks like to have a deeper involvement of lived experience in research projects and related policy work. It’s partly about control - who chooses who to invite, and does the inviting? Who writes the agenda? Who chooses the design spaces? Who chairs the meetings? What is to be discussed? What happens next? Who writes the recommendations? Who reports back to the funder?
But tokenism can happen even when the research team are doing all they can.
It’s hard to be asked to repeatedly share (sometimes traumatic) experiences when fundamentally things won't change, because the people in positions of power aren’t listening. Indeed, sometimes people went to events where the people in power just didn’t turn up. And even when some people did turn up, there’s often a small number of people that are genuinely engaged, and many other powerful people who aren’t. There’s often nothing that the research partners can do about this, but people can't keep going on hope alone. Sometimes it feels like running on a hamster wheel, where you are doing everything you can but don't see any changes in your life.
There was lots of discussion about the reasons that people in power don’t listen. Some of these are about the nature of social security - the way that politicians don’t think of themselves as people that use the system (unlike for the NHS), and the wider politics of division where people are separated into ‘strivers’ or ‘shirkers’. Some of this is about a focus on containing costs, so that social security is all about getting people off benefits and into work, rather than seeing it as a safety net or way of making people feel more secure. And some of this is because it takes time, effort and care to engage well with lived experience.
Either way, if the people in power are not interested in what lived experience can contribute, then it’s hard to force them to listen - even if the worlds of research and campaigning change so that they work in a better way. We can see this from the genuinely transformative projects that exist (like ChangingRealities, the work of ATD 4th World, some of the Poverty Truth Commissions), which some people thought were great in themselves, but hadn’t fundamentally changed things. DWP policies sometimes fail in their own terms because they don’t listen to lived experience (e.g. the failure of the targeted case review initiative to save money), but that hasn’t so far pushed them to engage on a deeper level.
Still, there were other times that experts by experience felt empowered, and many ideas for how this power could be increased.
We live in a democracy, and it is our elected representatives who decide things. At least for some people, it was perhaps not realistic to think that experts by experience (or any other type of expert)
should be ‘in the room’ with politicians when decisions are made. But that doesn’t mean that lived experience can’t have some power in changing things for the better, and some experts by experience had times of feeling genuinely listened to. This was a feeling of mattering, of helping to drive change, to have a feeling of purpose. One person can be ignored, but as a team we have a far better chance of being listened to; we are no longer a lone voice, but instead become a roar.
Some of these better experiences were with individual journalists and politicians that were committed to working as partners (see also below under respectful relationships). But there were also more systematic ways of involving lived experience in policy work. This hopefully includes the current Child Poverty Task Force, which will go around the country speaking to different people, and is speaking to ChangingRealities about how to do this well. It also includes the Scottish Social Security Experience Panels, which have resulted in some real improvements in practice, e.g. in changing the feared ‘brown envelopes’ to everyday white ones, and in ensuring that more disability assessments are done without calling people into face-to-face meetings. These are positive steps, even if they have a limited scope, 2 and are perhaps less transformative than we might hope.
Deeper involvement of lived experience in policy is different to deeper involvement in research, which different people referred to in different ways:
● Taking voice seriously, listening to people’s insights and ideas for change, not just ‘stories’.
● Thinking about whether there are concrete things that can be done at a local level, where you can see change more easily than at a national level.
● Thinking about whether we actually need any more research, or instead whether the issue is about acting on what we collectively know.
● Trying to reach out to the people who are not in the room - those people that are not yet currently convinced of the importance of lived experience. How do we bring the nonbelievers to the table?
● Looking for channels that might connect lived experience to policy decisions:
● Individual policymakers who can bring lived experience into political debates (including literal quotations at Westminster).
● Extending the Scottish panels to the rest of the UK.
● Setting up co-creation groups/advisory panels for each Jobcentre (to work alongside local care partnerships to help connect DWP into integrated care systems).
● A national commission on the future of social security, which includes not just claimants but also welfare advisors and work coaches.
And it means avoiding a simple idea of how social change happens (it’s more complex than great research → clever ideas → effective campaigns), and instead understanding the messier ways that change comes out of different people working together. There is clearly an opportunity at the moment to push for change; the Prime Minister has said that “true service…must listen to people far beyond the walls of the state and empower them to make our country better.” We need to claim power, using our collective resources to make demands of the state, perhaps couching some of these demands in the language of ‘social investment’.
Finally, several people noted that academics are in a position where their voice is listened to above that of other groups (connected to debates about ‘epistemic justice’ or ‘knowledge justice’). Many people felt this was unfair, but it’s difficult to do anything about these wider structures, other than trying to be part of wider movements to change them. In this context, it’s at least useful for experts by experience to be able to use academics’ credibility to help pursue their own goals.
2 In the Scottish panels, there are big silences on issues like adequacy or ‘'what does a better system look like?' And there is a sign that the most intensive phase of involving lived experience has ended, much as ‘Client Panels’ will continue. This will become clearer during the 2-3 year review process for Adult Disability Payment.
Respectful relationships
Respectful relationships are essential when involving experts by experience. Researchers have to learn to treat experts by experience as equals, as valued human beings - a ‘platinum standard’ of codesign.
Partly, this means that people need to be appropriately paid for their time. Being part of research/policy work takes time, particularly on the deeper levels. We don’t want research to be extractive or exploitative, so people need to be paid for their time. Some people thought that vouchers were fine [and indeed useful], but other people wanted actual payments - a recognition that this is a real job that adds value, rather than being dependent on kind gestures from others. Though one person pointed out a tension where if people are supported to have careers representing e.g. the experience of poverty, this career may distance them from the experience itself.
But it’s not just about the money - it’s about treating people with dignity and respect. Many people with lived experience of social security have experiences of trauma. And there’s nearly always a power imbalance when experts by experience are working with researchers (or journalists/policymakers). So researchers working with experts by experience need to use a traumainformed approach, which (as a starting point) recognises that experts by experience may be starting with a lack of trust and a lack of confidence in a context of power imbalances, and supports people appropriately in the face of this. This includes several specific things:
1. Support to speak out. Experts by experience may not be used to speaking out, particularly to people that have more power than they do. Those leading a project need to leave their power at the door, and to make sure there is a climate of encouraging people to communicate honestly, to have open dialogue, and to say when things aren’t working for them. This helps contribute to a feeling of mutual respect between everyone in the team.
2. Control over how we’re portrayed. This was a particular problem when speaking to journalists, some of whom were keen to misrepresent experts by experience or sensationalise their experiences into ‘poverty porn’. This could feel horrific, like a trap being set, of being dangled in front of people for pity. Better experiences were when journalists allowed people to proofread the draft piece, to have some flexibility about what to talk about, and generally showed that they want to listen to people rather than to trap them. (See also the related discussion under ‘Academic researcher perspective’ below).
3. An ethic of care. Genuine care is a form of respect, and a key aspect of trauma-informed partnerships. The worst examples of disrespectful relationships were where people got upset speaking to journalists, and they were asked to repeat this for the camera; but even without this, there’s a risk of emotional burnout. Better partnerships emphasised listening and care, a respect for people’s humanity, an understanding of when things might be triggering and emotionally demanding, an understanding of the fears people have in sharing things about their lives, and that ‘experts by experience’ should not be defined by a single part of their lives - there is much more to all of our lives than whether we claim benefits or not, whether we’re disabled or not etc, and all people have a variety of wider identities, roles and skills.
4. Helping to set boundaries. It is sometimes hard for experts by experience to set boundaries around their involvement to protect their wellbeing - this can be because of past trauma, or because of power imbalances, or because of other things. Some people had bad experiences with journalists, in particular trying to force them to do things they didn’t want to do (e.g. put their children in the background of a photo or interview, or of using their real name). Respectful treatment doesn’t just mean allowing people to say ‘no’; it’s about uplifting people to feel worthy, and therefore confident in saying ‘no’.
On some level, this isn’t rocket science; most of us can work out when we're being treated without dignity and respect. Respectful treatment at its heart is about treating people as a human being. It’s about providing support, but not in a patronising or infantilising way, so that people are better able to act for themselves and feel empowered.
The emotional side of working with other experts by experience is also tricky.
Different experts by experience will have different, strongly-held opinions. People talked about the need to build trust and find a way of working together, based on clear ground rules and an equal footing. Unconditional positive regard helps overcome this, for everyone involved.
Working together - at its best - can have positive emotional payoffs.
Some experts by experience talked about very positive feelings that came out of being in research/policy work. This is partly from getting a far better understanding of how poverty affects us all, from listening to different perspectives, and being able to discuss this in a safe and relaxing place. It’s partly how powerful it can be to be treated as an equal, as a skilled person, which changed the way that some people felt about themselves. And it’s partly about feeling proud to be part of projects and try to make change happen, as noted under ‘power’ above. Creative projects could be particularly powerful - this exercises a different part of you that gets murdered by part of the system.
We cover academics’ feelings about co-production just below.
The academic researcher perspective
Some academic researchers noted that the workshop’s discussion had been really interesting and useful, but had mostly focused on tokenism and how to avoid it, rather than on some of the other issues faced by academic researchers (see also the next section). There was an appetite for coming back to some of these issues on a different day, but we did discuss some of these issues at the workshop itself.
Academics described practical challenges in doing this work.
The incentives in the academic world work against deeper involvement of lived experience. This includes the way that academic journals work, stigmatisation of some collaborations, and the conflict with the ranking of which sorts of evidence are seen as the ‘gold standard’ (with randomised trials at the top). Experts by experience can sometimes write reports, but they are treated as inferior and ignored because they are not peer-reviewed - not only marginalising the evidence itself, but also making it harder for the researcher to get credit for it in career terms.
Funding is also a problem - making research/policy spaces inclusive takes a lot of time, effort and money, and often the funding available is time-limited (see also the comments above under ‘But there are things that we can do to make good motivations more likely’) . While there was at least one example of a successful co produced project where everyone decided to continue together when the funding ended, we obviously want a world where people aren’t forced to make these choices.
There are also wider problems in academia that also affect projects that involve lived experience. It can be a toxic environment where no-one - not the academic researchers, not the experts by experienceis treated with kindness and respect. And more than one person noted that the people that do the labour of making co-production happen are often on precarious contracts, and are almost all women (although at least one person felt that the inequalities were more complex than just one dimension). There is clearly a power hierarchy in academia too, and it often makes deeper involvement harder. As a result, some female academics felt that it was harder for them to write high-status reflections on lived experience work, because they instead spent their time ensuring that experts by experience were cared-for and treated respectfully.
It’s also a problem that the academic world tries to forcibly separate people into 'experts by experience' and' academic experts', even though people may be both. Sometimes people were pigeonholed as a 'lived experience expert', with their other expertise being marginalised.
Some academics felt that this work was emotionally demanding.
Several people talked about the emotions of academic researchers when involving experts by experience. Some academics talked about emotional investment and empathy, and how they felt they needed to build a thick skin when doing this work. The political challenges of this work were also hard; the desire to do transformative work, but feeling frustrated by the way wider structures make this impossible (or conflicted about whether to make things mild and acceptable to get traction with policymakers, trading-off transformation for influence). Several academics said they would appreciate talking about these feelings more with others. This may also help experts by experience feel that they were taking parts as equals, with academic researchers also showing some vulnerability.
The limits of lived experience research
Just as in the previous section (on the academic researcher perspective), we didn’t really discuss the limits of lived experience in research/policy in much detail, and several people were keen to come back to this at another point.
Some experiences might be more unfairly valued above others.
It is common for people to criticise lived experience research on the grounds that it is 'not representative'. Some of this criticism is unfair; a case of taking standards from quantitative (statistical) research and applying them to places where it doesn’t work. But there is also a genuine risk of generalising from 1-2 people on a 'lived experience panel' to say that this covers everyone’s experiences. People are not identical in any group (whether ‘benefit claimants’, ‘people in poverty', ‘disabled people’ or any other group), and it’s easy to fall into stereotyping any group that is different from ourselves.
One person suggested that generative AI tools - things like ChatGPT - might help us to analyse large numbers of people’s accounts, managing to combine depth (from speaking to people in their own terms) with breadth (in covering different people’s experiences). But we’re currently at the stage of exploring this, and it’s not clear whether this will work. Other people also had concerns about whether using generative AI tools in this way would really help enhance people’s voice in an authentic way. But even if these tools don’t solve these problems, exploring them may be a way of thinking about issues of power and diversity.
More broadly, though, a few people mentioned that the workshop had concentrated only on certain experiences of social security, missing out others (reflecting the way that social science research tends to talk about ‘lived experience’ mostly in terms of marginalised groups). We focused on means-tested working-age benefits, missing out people receiving the State Pension or Child Benefit. We missed out claimants’ views of other people around them, and how many claimants believe that other people they know are claiming fraudulently. And we missed out wider experiences that are relevant, whether those of Jobcentre staff, politicians, or taxpayers. We may decide that some experiences are more valid or useful than others - but it might be better to argue this explicitly, rather than being silent about these other experiences.
We didn’t talk about where lived experience might be partial.
We spoke at the start of the day about how lived experience might be both necessary and partial, and a couple of other speakers briefly echoed this. There were also a couple of moments where this was developed slightly.
One person pointed out that no-one had talked about ‘positionality’ - that is, where you come from can affect the way you see things, the way that people respond to you, and the findings/policy
recommendations you come out with. Given that the focus on lived experience comes from feminist work that talks a lot about positionality, this seems like a strange gap.
We know that more broadly, there are some people that are sceptical about involving lived experience in research, seeing it as 'bad science' or even a 'pollution' of science. We didn’t discuss this much, but one academic at the workshop talked about some high-profile debates in American sociology, prompted by the famous sociologist Loïc Wacquant (in this 2002 piece; free version here). This claimed that lived experience data can often result in ‘neo-romantic fairy tales’, telling the stories that liberal researchers want to tell, replacing one stereotype with another. Some of the people in this debate argue those living through something may deny the situation that they’re really in, lie to the people around them, and repeat wider narratives about what’s going on rather than having deeper insights into what’s really happening. In this account, you need to understand lived experience to understand the world - but you need to take it in context, alongside other sorts of information. However, usually lived experience is used when treating people's experiences as credible and authentic (and as a way of tackling wider knowledge injustice). There's therefore no challenge or disruption to their accounts, because if we're seeking to create a platform for lived experiences to have a louder voice, then why would we be challenging it? That said, several people said how important it was to merge different types of knowledge, rather than privileging any one form of knowledge over another, or seeing lived experience as a silver bullet. This comes back to the idea of lived experience as a necessary but partial form of knowledge - to get a rounded view, you need to bring together different types of knowledge.
What would a better benefit system look like?
Mostly we didn’t talk about what a better social security system would look like, other than that it would engage better with the lived experience of claiming. But we did hear people suggesting a variety of specific policies or changes, including:
● A different way of talking about need, and treating people with dignity and respect
● A better place for children - where they have the support they need to thrive, without the two-child limit and benefit cap
● Not forcing people in difficult situations to have to fight for their benefits, just at the worst times - it just doesn't feel that people get the support that they need to stand on their feet at a hard time, whether that's domestic violence or children's ill-health or anything else. Social services seem to be happy when they see you crying. I saw myself before as a victim of domestic violence, now I'm a victim of the system.
● A government that is for us, not against us
Someone noted that the Commission on Social Security led by Experts by Experience was paused for a while, but has now restarted.
A final word
Twenty years ago, research that involved lived experience at a deeper level was in its infancy - it's now much more mainstream. However, it is still difficult to conduct at all, and deeper levels of involvement are harder, much as there are fantastic examples of doing things well in projects like Changing Realities. It's therefore amazing to be able to come together to critically reflect on the potential and pitfalls of lived experience research.
The challenge going forward is: how do you have these conversations with people who are not as open to this debate?