Opinions on payments to participants in research

[Andy]

Here I am talking about payments to people who, for example, fill in a questionnaire, donate a sample or in any other way participate in a research study.

The poll is there if you want to provide a quick for, against or "it depends" answer - if you do answer "it depends" in particular I'd be interested to read your reasoning.

 

[JemPD]

It depends...

Where/how are the participants being recruited - so if they are already part selected - for example from a particular clinic, then a nominal, payment for a sample (so for an objective rather than subjective result).

It would worry me if it were for subjective, i dont know, might be unjustified but questionnaires are already so prone to bias, it bothers me, although if there were adequate blinding & controls... not sure.

Also a payment incentive could skew the demographic to people who need the money & how does that alter/confound the results?

In recruitment from a specific clinic the demographic is already not representative of the whole population so, my thinking was that in that case it would be less likely to skew the results, but then perhaps its even more important not to have anything else skewing results.

I do think people should have travel costs reimbursed if possible though. I dont think participants should lose out financially.

So my concerns are more about how payment might affect/skew/confound the results, rather than any kind of ethical 'people should not be paid for bodily fluids' kind of principle.

All that said i'll be interested in the replies & may well change my vote later.

LOL given my ignorance & dithering perhaps i shouldve just waited to vote until more knowledgeable people weighed in, but am procrastinating/avoiding something emotionally difficult to deal with by faffing on S4!

 

[EndME]

I answered “It depends”.

Does payments include reimbursing transportation costs?

I think it is important to make studies accessible to everybody. Other than that, I don’t think payments are overly productive. We all profit from well-conducted research and extra dollars spent there are probably far more meaningful than payments.

If the payments are relatively low I can still see how they can be very beneficial by creating extra incentives or by removing some financial hurdles that might be present when participating in a study. If the payments are high it can create the wrong incentives and might even invite people who don’t suffer from said condition, in that case I see them as significant risk. One caveat is that payments might make it easier to recruit different controls in studies (since these would generally not care whether research on LC/ME/CFS is moving forward) and might make it easier for patients with LC/ME/CFS to convince their family members to participate as controls.

Depending on their physical limitations, I believe, or at least hope, most patients would participate in a study if the quality of said study is good independently of whether there is a payment.

 

[JemPD]

If the payments are high it can create the wrong incentives and might even invite people who don’t suffer from said condition, in that case I see them as significant risk.

yes that would be a major concern, and a waste of funds.... although if it was a study which needed, for example, participants to have a test which was very painful or would take a long recovery time, in comparison to the burden of the problem being researched - & therefore the cost to potential benefit ratio was low for the participants. It would need to be commensurate.

Good point about controls

 

[ItsMERJD]

I answered "it depends" too.

On some studies, incentives are seen as unethical and I've seen some studies refused ethics on that basis (there's a clear division between incentives and reimbursement for say travel, too). Others it's seen as much more acceptable.

Personally, I think contributions for time/insight are broadly okay if commensurate with the time commitment, with controls in place for things like bias. I find it harder when discussing samples as how do you "price" say spit or blood? Do you skew towards certain groups if you do? I do wonder whether they're a bit of a blunt tool in difficult-to-recruit studies, even when pitched as a reimbursement for costs - as sometimes it's not a financial barrier preventing participation, in which case would the money be better spent reducing other blockers?

So yes - a lot of words without much insight

 

[Kitty]

I've said "It depends" because participation could mean anything from a 15-minute questionnaire to a day-long trip to a clinic that involves a lot of discomfort during or after the tests.

One thing that has come up in the last few years, though, is the apparent difficulty in recruiting control subjects. I don't know whether this is a real thing or I've just picked up on grumbles here about the compromises seemingly made by some teams.

If it is real and a study needs to recruit a new control group, offering a consideration like the ones used in market research might work. One model might be to ask participants to try recruiting a control for themselves, if the criteria are straightforward and it wouldn't involve asking for personal information they don't already have. If one of their suggestions is a good fit and willing to take part, they each get a retail voucher.

 

[duncan]

I've participated in several research studies. Back then, being paid helped with my decision to participate, but it wasn't necessary.

I'm sicker today. Arguably a bit more cynical as well; at the very least, more practical. If I knew the researcher and liked them, I'd do it without pay, but of course travel and lodging costs would have to be reimbursed. If it were a team I did not know, or worse, had reason to distrust, I wouldn't participate without pay and full access to all my results.

The travel thing matters. The stay matters. If the research requires a few days, there may be health ramifications to many groups with chronic conditions. In those cases, there should be compensation for that risk.

 

[Trish]

I think they should pay travel costs and other costs involved in taking part, and if it involves significant time commitment and it's a well funded study it seems reasonable for people to have some payment for their time.

Also if the person needs to be accompanied by a carer there should be payment to cover their costs too.

I think the main thing is that nobody eligible medically and geographically should be prevented from taking part because they can't afford it, as that can lead to skewed samples where only the well off are included.

Edit: on the other hand it shouldn't be so generous that people are attracted to take part to make money and may lie about their symptoms in order to do so.

 

[MeSci]

I too voted "It depends" for the same reasons as others have given.

I've just participated in a government-run at-home COVID study, which no longer pays, and expect to participate further, as I have lots of test kits they sent me when I agreed to.

I was paid for my participation in earlier COVID studies.

 

[Braganca]

I voted yes.. I think it’s better to pay a nominal amount to each person than to have to pay a researcher to do the admin of reimbursement, gathering transport receipts and record keeping.

I was paid $100 to participate in an ME MRI study in NYC. Was only invited to participate after having been diagnosed by an ME consultant.

 

[ME/CFS Skeptic]

I think it depends on the goal. When there is extensive testing with multiple visits that is quite taxing it might be most appropriate to compensate patients for their efforts.

In other cases, when participation is less taxing but you need as many participants as possible, for example for questionnaire research, it might be best to work with a limited number of small prizes that will be handed out randomly to one of the participants. So that each participant has a chance to win something, but no guarantee.

 

[Peter T]

I don’t know if there is any recent research of the impact of paying participants of the results of an experiment.

All I can remember is slightly tangential to the current issue. A study looking at ‘cognitive dissonance’ involved a deliberately pointless and boring psychological study and then asked participants what they thought about it. Half were paid only expenses and the other half were paid well over the odds. The former then said how valuable they thought such research was and how highly they appreciated participating, however the latter reported how pointless they thought the study was and how they would not have wasted their time if they had not been paid. However this was well over fifty years ago.

For me the questions around payment are not so much ethical as methodological, whether this potentially effects participant motivation and bias. I have no idea how much and in what direction payment is likely to impact on potential bias, so currently have not responded to the poll.

[edited to correct typos]

 

[MatthiasRiem]

I voted "It depends".

Apart from methodological issues, something that needs consideration - especially in the context of ME - is the effect of payments on disability pensions and benefits, as well as related legal risks resulting from accepting the fee.

Having recently weighed participation in a study that involved invasive procedures and several journeys to a hospital in a different city, I have some perspective on this.

The study offered a payment of several hundred euros for participation, but had only budgeted a kilometre allowance as a way to reimburse travel costs.
Checking the rules governing my disability pension revealed that receiving a fee for participation would (a) trigger an obligation to declare that fee as "income from work" and would (b) lead to a deduction of the full amount of the fee from the pension (so no financial benefit).
Also, a social security lawyer I consulted about this warned me that declaring the fee in line with my legal obligations would trigger algorithms at our DWP-equivalent. After all, income from work can be indicative of increased work capacity. This could have led to a reassessment.
As for the travel costs, since I am too ill to use trains and buses, my only way of getting to the hospital would have been by paying for cab rides, which the study had no budget for.

Since the costs of travelling by taxi would have been close to the sum the study had budgeted per subject (payment for participation plus kilometre allowance) and since accepting a reimbursement of actual travel costs would have led to none of the legal obligations and consequences attached to the acceptance of the fee for participation, it would have been much preferable - in my situation - if the study had planned for reimbursement of actual travel costs.

While all of this concerns my specific situation, I can't imagine I was the only invited participant with a disability pension and dependent on cab rides.
And I can well imagine that many participants would not go through the trouble of consulting a lawyer and finding out about their legal obligations and the risks of accepting a fee. The thought of other participants having happily accepted the fee and facing consequences (fines, interruption of benefits payments, etc.) down the road makes me shudder.

I think there are lessons in here that generalise:
• Reliance on disability pensions/benefits/welfare should be assumed for a significant percentage of participants when planning ME-studies.
• Limited mobility and reliance on expensive modes of transportation should also be assumed.
• Research teams, unless already intimately familiar with ME, won't make these assumptions by themselves. Therefore, patient involvement needs to happen in the early financial planning stages of ME studies.
• Flexible budgets, that allow money to be shifted between a budget for reimbursing travel costs, on the one hand, and a budget for paying participants for participation, on the other, will enable forms of payment adjusted to the situation of each participant.
• The burden of finding out about legal and financial risks of participation and of accepting fees and reimbursement should never lie with (potential) participants. At a minimum, potential participants should be warned that accepting fees and reimbursement might have legal ramifications for them that they need to find out about. But really, research teams should get specialised legal advise in these matters and prepare a document to inform participants of the consequences and risks attached to accepting fees and reimbursements, at least for the most salient forms of pension/benefits/welfare that participants might be receiving in the country where the study takes place.

[edited for clarity]

 

[NelliePledge]

Yes if it’s something that requires a time/travel commitment

I was interviewed at home for a government research programme and got a £40 voucher it was probably about 90 mins. And pretty demanding cognitively.

I think anything less demanding than that such as Decode ME questionnaire and spit test wouldn’t need financial reward.
For longer questionnaires If an incentive is felt helpful something like an increasing sum donated to a project supporting people with Very Severe ME could be considered if 80/90/100 % of target reached.

 

[Kitty]

Apart from methodological issues, something that needs consideration - especially in the context of ME - is the effect of payments on disability pensions and benefits, as well as related legal risks resulting from accepting the fee.

I think in the UK it depends how it's set up and what it's called.

I once received a £600 incentive for a market research project, plus the rail tickets to get me to London and back and the cost of an overnight stay. I was self employed at the time, so I declared it to the tax office. They told me it didn't need to be declared because it wasn't taxable income. I then started to worry that I'd received advice from someone who'd only started the job that morning!—so I also checked it with the market research agency and a friend of a friend who did bookkeeping for a living. They both said the same.

I did some much less well-rewarded market research projects to supplement my benefits over the next few years. You can't do them frequently (they rarely accept participants who've been involved in the last six months), and usually the incentive was under £60, so it wasn't at all lucrative, it just helped pay for occasional extras. That wan't considered paid work either and only needed declaring to DWP if it took me over the £6K capital limit. It didn't, so I didn't.

Same goes for the Covid study; I "earned" about £450 in retail vouchers through the pandemic, but sticking a cotton bud up your nose once a month and answering a set of questions isn't counted as work, and the £20 ASOS voucher isn't earnings.

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.

 

[Wonko]

Yes if it’s something that requires a time/travel commitment

I was interviewed at home for a government research programme and got a £40 voucher it was probably about 90 mins. And pretty demanding cognitively.

I think anything less demanding than that such as Decode ME questionnaire and spit test wouldn’t need financial reward.
For longer questionnaires If an incentive is felt helpful something like an increasing sum donated to a project supporting people with Very Severe ME could be considered if 80/90/100 % of target reached.

Dunno...it took 3 trips out specifically to post the spit sample back before I actually achieved it.

The post box is inside the main local supermarket so thos 3 trips out cost me £34 (in total) that wouldn't have been spent then apart from the trips.

The other closest post box in this area (bus stop wise) is burnt out (or was then, probably still is). Another exists, probably, but is up a hill...so......

Not to mention 3 days with additional (only) trips out when I should have been not outside....and not taking trips out on consecutive days simply to do one thing that kept mucking up

Gotta love how ME mucks up the simplest of tasks.

 

[Kitty]

Just as a postscript to my comments about DWP—one area of potential risk might be if the research involved something a person has said they can't do. Knowing the answers I gave to the PIP questionnaire, they'd have every right to come after me if I then went off and did a 2-day CPET on an exercise bike. As there's zero prospect of me being able to do leg exercises I'm not concerned, but it is something to bear in mind.

 

[MatthiasRiem]

I think in the UK it depends how it's set up and what it's called.

I once received a £600 incentive for a market research project, plus the rail tickets to get me to London and back and the cost of an overnight stay. I was self employed at the time, so I declared it to the tax office. They told me it didn't need to be declared because it wasn't taxable income. I then started to worry that I'd received advice from someone who'd only started the job that morning!—so I also checked it with the market research agency and a friend of a friend who did bookkeeping for a living. They both said the same.

I did some much less well-rewarded market research projects to supplement my benefits over the next few years. You can't do them frequently (they rarely accept participants who've been involved in the last six months), and usually the incentive was under £60, so it wasn't at all lucrative, it just helped pay for occasional extras. That wan't considered paid work either and only needed declaring to DWP if it took me over the £6K capital limit. It didn't, so I didn't.

Same goes for the Covid study; I "earned" about £450 in retail vouchers through the pandemic, but sticking a cotton bud up your nose once a month and answering a set of questions isn't counted as work, and the £20 ASOS voucher isn't earnings.

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.

Thank you, @Kitty for explaining your situation in the UK. I'm in the Netherlands. Your benefits system is considered draconian over here, but it seems in at least some respects, the system here is even more limiting.

 

[Kitty]

Your benefits system is considered draconian over here, but it seems in at least some respects, the system here is even more limiting.

It's about the legal status of the payments, really—a cash gift is the same whether it comes from a market research company or your auntie. It's freely given, it's not bound by the contracts and obligations that apply to employment or the provision of goods or services, so the only question is the size of it. If your auntie happens to be an oligarch and slips you a few million, it's a bit different to the price of a pair of good shoes to someone who doesn't have much in savings.


Edited to add: you called the payment a fee in your original post. That word wouldn't be used in the UK for research incentives, because it implies there's a contract of service or for services. If there were such a contract, though, it'd be correct to call it a fee.

 

[MatthiasRiem]

Thank you for explaining this aspect of the meaning of "fee" to me, @Kitty. English is not my first language.
According to my lawyer's advice, the payment for participation in research would be considered "inkomen uit overige werkzaamheden" ("income from other kinds of work", i.e. work not done in employment and not as a business activity), which is subject to income tax and will be deducted from (certain kinds of) disability pensions.
[edited to add second sentence]