Clients often ask us, “What should I pay patients and caregivers for participating in market research or health economics & outcomes research? Can we give a donation instead?”
We’ve completed over 600 US patient recruits across dozens of rare patient disease areas, and we’ve learned a bit.
We generally recommend paying rare patients about $100 per hour of their time. This means $50 for a 30-minute survey, $100 for a 60-minute telephone interview, etc. Even for a 5-minute micro survey, we pay $20 or $25. This is not only to pay them for their time, but to honor them for their time and attention (we do call in “honoraria” for a reason).
Sometimes we are told that the end client’s legal team has specific incentive rates that they can pay. If they are in the ballpark (e.g., $85 for an hour interview) that usually works. Sometimes these are based on what legal has determined to be an acceptable market rate. We are happy to share what we have seen over hundreds of rare patient studies to help them revise (if necessary) their view of the “market rate.”
Why not offer a donation to the appropriate advocacy group instead of a payment to the respondent? This is possible. Of course, the respondents are free to do with their payment (we pay by check) anything they choose, so they could make a donation if they desired. As an experiment, we recently offered Hemophilia respondents a choice. For their 30-minute online survey, they could receive a check for $50, or they could receive $25 themselves and have $25 go to the National Hemophilia Foundation. The results? 95% chose to get the $50 themselves, 5% wanted half to go to the NHF.
We pay by check for two reasons:
- Respondents prefer checks. While gift cards are nice, they can’t be used to pay co-pays or rent. Checks provide the greatest flexibility for patients
- Checks server as additional fraud control. Anyone can get unlimited email addresses and if they were to get multiple survey links it would probably be detected via IP addresses, but why take any chances? To receive a check a respondent needs an address, and it isn’t easy to obtain a lot of those!
One final note – we feel strongly that honoraria should not be raised mid-stream in a study. We’ve all been there – responses aren’t coming in as needed, and the request comes in, “Pay them more!” But this is usually not the answer. $100 per hour of their time is attractive, $125 or $150 likely won’t attract those who have been sitting out. Rare patient communities are close knit, word spreads and we have to pay all respondents the higher honoraria, even those who have completed, otherwise they harbor feelings of injustice. And what would they learn? Don’t respond right away, wait until they raise the payment. Exactly the opposite of what we want to instill.
We pay our patients quickly, as soon as the studies are complete, and (unfortunately for us) long before we are paid by our clients! But we want to treat them well and encourage their speedy participation, so the least we can do is return the favor.