To HATE the phrase "lived experience"?

I haven't read the full thread because I got infuriated

'Lived experience' is generally used for experiences which have some negative elements, generally which also involve some involvement with professionals. So autism, homelessness, being in care, mental health.

The person who is living in that situation has a specific perspective and understanding which is useful. This has historically not been recognised, acknowledged or heard. Talking about 'lived experience' is a way of identifying this different type of experience and knowledge, making it visible and showing its value.

It's not universally applicable. So you wouldn't talk about 'lived experience of cruising' because there aren't those negative connotations. You aren't dealing with a state employee to get access to it. Similarly, there is no statutory duty to provide anyone with a penthouse. 'Experiencing' a penthouse doesn't have a negative impact on your life chances.

People with lived experience aren't always right. Their knowledge is anecdotal. As long as it is understood as qualitative and unrepresentative, it is useful. Having someone involved in making decisions who knows what it can feel like to be in your position is incredibly helpful.

'Lived experience' is a really clunky and unpleasant phrase. I can understand why copy editors would hate it. But that doesn't mean it isn't useful.

For health and social care, it’s irrelevant who is right and wrong, correct or incorrect here.

If we reverted to just considering and talking about “x person on the guideline having experience of that condition”, we would end up back in a situation where one (likely medical person) would represent the experience. People would consider “experience of” as shorthand for professional or lived experience.

The important thing is the outcome. We want broad involvement in designing services. The current situation of using the term lived experience works to achieve the desired outcome. Would you prefer that your “correct” use of language is used and the unintended consequence of decreased representation is the outcome?

I think you make a great point here. It is also exemplified by the term 'experts by experience' which some seem to be pushing in the NHS (although the last person introduced as this on a training course I was on laughed it off and said he doesn't feel like an expert in X just because he's one of many people who have it). It seems that NHS trusts are so desperate to have people with 'lived experience' involved in policy-making and research that they give huge weight to the views of anyone prepared to get involved at all. It reminds me of how people on school Parents' Associations are very rarely representative of the views of most parents and people who become local counsellors rarely represent the views of most actual people living in that area. By virtue of being well enough or having enough time to participate, these people are not representative.

Agree- the post about the “autism ambassador” is arrogant in the extreme. How dare @ThisFluentBiscuit authoritatively tell people what these roles should be called 😡

I was with you OP but actually this makes sense

I prefer the phrase “First hand experience” which we used to use

You can. But the normal use of experience in the professional setting would be that they had experience of working with the condition so lived experience is to contrast with that

But the point there is the range of views YOU gather by speaking to a wide range of service users/homeless people/drug users, including the views of hard to reach populations, is what should be considered. Not one or two individuals’ ‘lived experience’. The focus on ‘lived experience’ means that too often that hard work of gathering inputs from wide range of individuals is not done, or the conclusions draw from that research dismissed (as many have done on this thread) as not as important as the experience of a single person.

It is not that the personal experiences should not be listened too, it is that the personal experiences of a single or very small number should not be given weight over those of others just because it is expensive, hard word, or may give results at odds with those of outspoken advocates or those with political conflicts of interest.

I actually think that you're confusing what type of object the verb "experience" can take.

Consider as an example the verb know.

We say: I know Anna. I know karate. I know Prague. I know that penguins eat fish. I know how to fish. I know that racism in the US is a major cause of conflict. I know how to ride a bike.

In the same way, to experience [object] need not imply that one has had a direct, unmediated and personal experience of the object. It could be a second hand experience.

But this person surely wouldn’t say “in my experience of being a person with autism”? They would refer to their experience of working with children with autism?

Yes you're quite right. A lot of my time is taken up by thinking of ways to include "hard to reach" people in my studies. They absolutely need to be included. I'm not actually working with service users as it's a different field but I have used the wrong term, it should be homeless people or drug users or whatever.

Yes, there is value in scientific research - but it doesn’t tell the whole story.

For example, a lot of research into mental health treatment uses measures that are not meaningful to patients.

And some research simply doesn’t exist because it’s not been funded or isn’t of interest. So research doesn’t trump everything else.

I think this is the danger, the idea that one person's lived experience carries any particular relevance. In that sense it's no different to someone who smokes 20 a day and lives to 100. It could be representative but you just don't know.

To do research you need to select several people with the relevant experience, ask them the things you want to know, then you keep going until you aren't getting any new ideas . (Called saturation). Obviously you need to ensure that the people you ask are representative of the group you're interested in - if neuro diversity you would need a selection of people with different conditions. If autism only you would need a smaller number of participants.

However it depends on the aim - if it's to support a single person or advise on a specific situation in a workplace, then the opinion or experience of one person could still be very useful

I dont and we spend our sessions explaining this is "our personal lived experience" the discussions you will hear from all of the living ambassadors are all completely different and if you meet 1person with autism youve met 1 person with autism, BUT it gives a tiny look into challenges we may experience not from a clinical handbook but by telling you about day to day life and experiences.

I'm in social science research and the idea of starting to plan interventions by asking service users what they need

This shows the problem though - you plan interventions by asking a few people who are already engaging with an intervention what they need. Not those who are falling through the cracks, for whom the intervention is so far removed from what is needed that they will never be service users.

That's just a straw man example

Even in situations where there is a distinction to be made, as others have said it doesn't necessitate the use of that particularly smug phrase "lived experience".

I particularly object to the implication that "lived experience" is supposed to trump all academic knowledge and professional expertise. I.e. Helen Joyce knows nothing about trans-identifying people because she has only researched and written a best-selling book about it, whereas Joanna Bloggs who has been trans for five minutes is immediately an expert.

Probably because 20 years ago the thinking was very different.

I'm in social science research and the idea of starting to plan interventions by asking service users what they need, rather than doing what appears to be a good idea to professionals with no lived experience, is relatively new.

See there the use of the word lived. It could be rephrased to avoid use of that word but in the context it's a helpful word

I am LOLing @ThisFluentBiscuit at how almost everyone is telling you that 'lived experience' is different to just 'experience,' and you're constantly stamping your feet and telling everyone that they're wrong! 😆

The 50 something percent who agree with you are very likely agreeing with you because they think the phrase is annoying. YANBU to think it's annoying.

But yeah YABU to say that people are saying it 'wrong.' They are 2 different things. Why won't you accept that? You're making yourself look rather petulant, and stubborn, and you're embarrassing yourself more and more with every post you submit! 😬