As of January 1, 2023, for new studies the honorarium for patients and family caregivers is $120 per hour.
Rare Disease Day was Feb. 28, 2015. I particularly like when it falls on Feb. 29 on a leap year, appropriately very rare.
To honor the occasion, we are sharing three rare patient recruiting tips, gleaned from conducting over 260 rare patient recruits in the past year.
- Lead with your best offer. We generally compensate patients with $100 per hour of their time, (e.g., $25 for 15 minutes, $50 for 30 minutes, etc.) This is motivating to patients. We pay by check; when we’ve surveyed our patients, two-thirds preferred a check over a gift card. A check can help with co-pays and rent, a gift card cannot. Please don’t plead to raise the incentive midstream when you need a few more completes. There are several problems with this:
- Rare patient communities are close-knit. They talk among themselves. If one does a survey for $75, she is likely to find out if someone else did it for $100. So all have to be given the increase, and in the meantime you’ve upset them.
- When you raise the incentive, you are rewarding exactly the behavior we don’ want to reward. We are teaching them not to respond quickly, to wait for a better offer.
- Finally, we find most patients want to participate, a few dollars difference in honoraria is not going to attract them if they aren’t interested.
- Don’t reject a date for the prom and then change your mind. What do I mean? Often our clients have very specific and difficult screening criteria, even within the rare patient audience. Once the incidence rate proves impossible, they elect to loosen the criteria. But we never attract as many on the second and third attempts as we would have the first time out with that criteria. Plan whom you would bring to the dance, don’t reject the 2nd prettiest/handsome girl or guy in hopes that maybe you’ll get the prom king/queen. Those whom you initially rejected aren’t likely to go with you when asked a second time.
- Go to them, don’t make them come to you. Our patients are, by definition, ill. They typically don’t want to travel downtown, on a specific date and time. They may need a caregiver to come with them. But they are happy to get on the phone, to be on the web, to use a webcam. And rare patient numbers get thin by market. Don’t promise a full day in central facility! Get them by phone. And you can visit them in their homes as well.
We are happy to give you our advice on recruiting rare patients for your project. And we are happy to work with other recruiters – teamwork is the norm in the rare patient world.
Come by our booth at PMRG, March 15-17 in the Washington DC area, and enter to win a $100 Amazon card (and we aren’t raising our incentive!).