Opinions on payments to participants in research

[Kitty]

Thank you for explaining this aspect of the meaning of "fee" to me, @Kitty.

I'm sorry if it sounded as if I was correcting you, I didn't mean to!

It's surprisingly hard to describe the difference between a legal contract or obligation (which could be defined as work), and a one-off private arrangement with no contract or obligation on either side (which may not meet the definition of work).

 

[Sean]

I voted "It depends".

I certainly think participants should have their costs covered.

Beyond that gets problematic because potentially perverse incentives start coming into play.

 

[shak8]

I voted yes. I think in order to get a representative sample (economic and education stratification) you are going to need to offer compensation. Many people are going to think "what's in it for me; isn't my time worth something?" Also, it now customary.

There is guidance for IRBs about whether there is undue influence of compensation and how that impinges on informed consent https://www.fda.gov/regulatory-information/search-fda-guidance-documents/payment-and-reimbursement-research-subjects

 

[Andy]

Also, it now customary.

Perhaps in America, I'm not so sure elsewhere.

 

[Dolphin]

Perhaps in America, I'm not so sure elsewhere.

I remember hearing that people in the US are paid to donate blood. In my country and I think a lot of others, it is unpaid.

 

[shak8]

Podcast on the 900 for-profit blood plasma donation centers in the US

https://www.npr.org/2021/05/14/996921658/blood-money
There is a shortage of blood plasma which is essential for treatment of immunodeficiency diseases and in treatment of cancers, etc.
The US exports blood plasma globally. Good bit from Brazilian doc who says the payment of donors is a non-issue. He's concerned with keeping patients alive.

However, whole blood donors are not paid in essence:
https://www.statnews.com/2016/01/22/paid-plasma-not-blood/

 

[ItsMERJD]

Working as part of the research team as a patient rep would be very different, and would affect means-tested benefits. But I don't think a consideration for taking part necessarily would, unless someone already had nearly £6k in savings or capital.

Quoted this bit, but you're right in that it very much depends on status, amounts, and who your benefits assessor is sometimes. We've seen cases where folks receiving some Tesco vouchers have had it seen as income and taking them over their weekly threshold on UC, which resulted in benefits sanctions. It's a really difficult area for us to navigate as there doesn't seem to be a huge deal of consistency in the UK, even with some good work being done by NIHR and others. We're also peripherally aware HMRC seem to be tightening up on whether research involvement is considered income re: self-assessment, too, which further muddies the waters. We (workplace) have to take that position of advising people to seek financial advice - but not sure how realistic that is given that even the most dedicated rep is unlikely to be earning the sorts of money that you can spare for independent financial support!

It really does make things more difficult than they need to be.