I am aware that there has been papers and talk recently about “imposter” qualitative research participants. This is probably a controversial question but is anyone seeing the same issues in people applying to be patient and public partners in research? Any strategies to deal with this? #PPIE - ThreadSky

lynnlaidlaw.bsky.social • 49 days ago

I am aware that there has been papers and talk recently about “imposter” qualitative research participants. This is probably a controversial question but is anyone seeing the same issues in people applying to be patient and public partners in research? Any strategies to deal with this? #PPIE

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neilchadborn.bsky.social•48 days ago

We have been discussing this at Institute Mental Health. It’s tricky - Patient & Public Involvement is about building trusted relationship betw members & academic researchers - but if that’s founded on misinformation…

neilchadborn.bsky.social•48 days ago

I try to avoid paperwork & form filling, because we are trying to be inclusive & welcoming. Studying dementia - there is enough stigma & barriers out there already! And people may have symptoms & concerns but not have a diagnosis (yet) #PPI #inclusion

louiselocock.bsky.social•47 days ago

Agree. I haven't personally come across any PPIE 'impostors' - but then it's only in the last couple of years I've come across research participant impostors, so you never know. I'd like to think it'd be harder to fake a condition over the course of a whole project and many discussions...

lynnlaidlaw.bsky.social•47 days ago

It’s been an issue in a few projects for me when advertising on the People in Research website. We have managed to spot the issue before putting the PPIE group together. It’s shocking to me that people would do this.

sgnicholls.bsky.social•47 days ago

I have heard similar and it was attributed to to public disclosure of compensation in adverts.

lynnlaidlaw.bsky.social•47 days ago

This certainly seems to be part of the issue for imposter qual research participants. It would be a shame if the advances in remuneration for public partners has resulted in this issue.

lynnlaidlaw.bsky.social•48 days ago

Thanks Neil, I agree it’s very tricky. It’s only because I am joint PPIE lead in a couple of projects that I realised this is an issue. It also has the potential to affect the relationships between public partners in a PPIE group. I just feel it needs to be acknowledged openly.

neilchadborn.bsky.social•48 days ago

Indeed. The other point is the ‘public’ bit of #PPIE - we should welcome people who have a (genuine) interest in the issue, even if they are not directly affected. Eg a volunteer visitor of a hospital ward would have a keen interest

lynnlaidlaw.bsky.social•48 days ago

Yes, but it should also depend on the purpose of the involvement which should be clear. I really like this paper which talks about these issues

https://researchinvolvement.biomedcentral.com/articles/10.1186/s40900-021-00282-1

neilchadborn.bsky.social•48 days ago

Thanks for sharing Lynn, I’ll have a read!

lynnlaidlaw.bsky.social•47 days ago

It’s a great paper and very practical.

laislabonita.bsky.social•47 days ago

How do you mean Lynn? Not seen anything so could you fill in a bit more detail on what this is about?

lynnlaidlaw.bsky.social•47 days ago

It’s people applying to be involved in research as public partners stating that they live with certain diseases and conditions when they don’t. It’s been recognised as a an issue in qual research, I was wondering if people had experience of this with PPI

https://onlinelibrary.wiley.com/doi/10.1111/hex.13724

laislabonita.bsky.social•47 days ago

Wow - very strange. Much of it?

lynnlaidlaw.bsky.social•47 days ago

I have some experience of this I don’t know how big an issue it is though.

elenichambers.bsky.social•49 days ago

Nearest I’ve seen is people getting involvement work when they believe they have the experience/skills but don’t really. This seems more to do with poor recruitment practices than anything else. All too often people are handpicked with no equitable processes in place. It gives involvement a bad name

jthompdementiaadv.bsky.social•49 days ago

Agree. Always important to 'involve the right people', 'involve enough of them' and 'involve those people enough'. Recruitment practices matter.

elenichambers.bsky.social•49 days ago

I was reminded of the HRA principles too, I think they are beautifully simple…

lynnlaidlaw.bsky.social•49 days ago

Thanks Eleni, I agree this is an issue as well. But I have seen an increase in people stating they live with a certain disease or condition in order to become involved when they don’t. 🤔

elenichambers.bsky.social•49 days ago

Very disingenuous…but a clear solution to it, simply they have to go if they don’t fulfil the remit…

lynnlaidlaw.bsky.social•49 days ago

I think the issue for me is how do you establish whether someone fulfils the remit or not? I feel we tend to take people on trust in involvement.

elenichambers.bsky.social•49 days ago

How do you do that for any work? I’m not suggesting there has to be the same rigour or lengthy process but otherwise it seems no different from other recruitment and selection surely?

lynnlaidlaw.bsky.social•48 days ago

Is PPIE seen as work in the conventional sense? Should we be asking for references and proof of having a disease or condition? I don’t have the answers but feel that there needs to be acknowledgment that this is an issue.

eidin.bsky.social•47 days ago

Interesting.....same in qual research occurs really a big issue now

lynnlaidlaw.bsky.social•47 days ago

Agree. I feel it has to be acknowledged in order to do something about it as qual research is doing.

elenichambers.bsky.social•47 days ago

Oh, but there are things being done - I commented on this some time ago: https://healthandcareresearchwales.org/sites/default/files/2024-07/Ineligible_Public_Involvement_paper_v1.pdf

lynnlaidlaw.bsky.social•47 days ago

This is really helpful, thank you

jaxr.bsky.social•47 days ago

The PPI I am involved with is at my local hospital where the chair of one research project sees me as his patient. But in others I do not think they have checked my health history to see if I have experienced the specific condition. I do think some of us get approached cos we ‘fit’.

lynnlaidlaw.bsky.social•47 days ago

My experience of this issue has been when advertising in websites such as People in Research.
I agree it’s not an issue when you know someone and have worked with people before.

jaxr.bsky.social•47 days ago

Well it can be - this consultant reckons she’s ok so we can involve her too without doing their own checking.

louca-mai.bsky.social•47 days ago

Interesting question Lynn, especially when public involvement is one-off and/or online - which makes it hard to know who people are (or even if the people attending are the same people who booked). But I'd be interested to know why people would want to do this - certainly not for money or fame!

lucyselman.bsky.social•47 days ago

I have come across this and I think sometimes it is the money. People have to live off very little. Every bit counts.

lynnlaidlaw.bsky.social•47 days ago

Yes, very sad but true.

louca-mai.bsky.social•47 days ago

When looking for young people to get involved in #PPI groups/projects we normally ask them to fill in an 'expression of interest' form which includes a free text box asking for info on why they're interested & relevant lived experience. If lots of interest we may have an initial 1:1 meeting...

louca-mai.bsky.social•47 days ago

... but more to ensure diversity of exp/perspectives that validation. With online groups we've had to push for cameras on (where possible) for safeguarding reasons - so we can see who people are

lynnlaidlaw.bsky.social•47 days ago

The cameras on issue is related to this I feel. It’s increasingly difficult to verify identity especially when people have their camera off and don’t contribute at all to meetings. Are they even present?

lynnlaidlaw.bsky.social•47 days ago

I wonder if we just need to accept the issue for one off meetings. It’s easy to be cynical and wonder if it’s for the money? 🤔

sarahdelaney73.bsky.social•46 days ago

This has come up as an issue - so the NIHR and Health and Care Research Wales developed a guidance doc on 'ineligible public involvement' https://healthandcareresearchwales.org/sites/default/files/2024-07/Ineligible_Public_Involvement_paper_v1.pdf

lynnlaidlaw.bsky.social•46 days ago

Thanks Sarah, @elenichambers.bsky.social shared this document with me yesterday. It’s very helpful.

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