To think ‘lived experience’ doesn’t make you automatically right?

[ThisFairMauveLemur]

You can have trauma and a bad take.

Yanbu. I work in the charity sector and grant-givers often seek to prioritise organisations led by people with lived experience. Which is lovely in theory but unsurprisingly there are not many survivors of SA/Muslim women leaving arranged marriages/people with experience of working in the greyhound racing industry/Rohingya people leading UK charities. I’m all for real and significant experience etc etc but I don’t know that this is it.

And as an autistic woman I have rarely found an autistic spokesthing that I feel represents my experience.

I think it's important in some contexts. I work in a field related to the pharmaceutical industry and there's an increasing emphasis on patient voice within R&D. Partly it's just respectful, but also the lived experience can be vital for research direction. For example, for years research in a particular autoimmune condition focused on treating pain, because medics and researchers assumed this was the most debilitating part of the condition. When patients were finally consulted, the majority said the worst element was fatigue, so the research had been targeting the wrong thing.

On the other hand, there is some evidence that the wider patient population living with any given condition don't necessarily feel represented by the patient experts (as in the case of ASD as mentioned by a previous poster, but also in other conditions), so it's important to remember that lived experience can come with substantial biases.

I have no issue with the phrase.

No. I have experience of the welfare system through my work, but it is theoretical/policy/applied knowledge. I can tell you the why’s and therefore’s of benefit rules and why they were introduced/what the intended consequences are etc.

I don’t have the lived experience of receiving/surviving on benefits and the negative impacts that has on individuals and their children/family.

There is a huge difference that academics and policymakers can learn from

So personal experience then?

I dislike the way its presented as a "gotcha" in any debate as if it had equal validity to actual data. It merits consideration but it is not scientific.

I think this is a really important point. In my job I work with academics and also with policymakers. Sometimes conversations also include people with ‘lived experience’ of a particular policy area, so a hospital patient or a carer for example.

I always think it’s a tricky balance for policymakers to manage. They have to be fully respectful and 100% appear to consider the lived experience angle in policy but this can be easier said then done. And ultimately how do you weigh up lived experience v academic research & evidence?

There’s also the issue of whose lived experience is being heard. For example you can have a couple of very vocal patients with strong views on aspects of their hospital care. But it doesn’t necessarily mean their views represent the majority of patients.

@TinyTempest - for me from an academic pov it’s more than personal experience - it’s a way of amplifying the voice of the marginalised, centring their experience and working collaboratively to resolve issues.

I think it’s used incorrectly in day to day life when experience/personal experience would be more appropriate. Lived experience is a research term which can be used to help theme ideas together during analysis. Does t help that there isn’t an agreed definition of the concept of lived experience.

Academic knowledge is a bit moot too, once you delve into it.