As of January 1, 2023, for new studies the honorarium for patients and family caregivers is $120 per hour.
One of the biggest complaints that we get from our Rare Patient Voice patients and caregivers who participate in our surveys is when they don’t qualify. It’s very frustrating to get excited about, for example, a one-hour interview where you can voice your opinions and that might pay you $100, and you click on the link to provide your information and they tell you that you do not qualify for the study. We understand that frustration. We try to avoid this by targeting our invitations as much as possible to those who likely will qualify, based on the information we have about each panelist
However, we cannot provide all the detailed qualification criteria in our invitation. Think about it. If we said exactly the type of person with not only the condition but what medication they take, etc. people could answer just to take part in the study whether they matched those criteria or not. Our clients are very sensitive to this; they prefer that we do not put detailed information about the study in the invite for that very reason. So what we tend to do is we will note the disease or condition that we’re looking for in our invitation but not a lot of other details. You’ll have to go through the screening process and provide your information to see if you qualify. But that should take only five or at most 10 minutes. The idea is we do not want to waste your time on a study that you won’t qualify for.
We recently had one of our panelists who is also a member of other panels tell us that we don’t provide nearly as much information about the study as some of the other panel companies. He actually sent us some examples. To be honest, I think these other companies are doing their clients a disservice by providing detailed information about the type of person that will qualify. I think this could lead to fraud, giving people enough information so they know how to qualify for a study. It’s like our nightmare vision of a telephone recruiter saying, “You take Drug X, right?” Leading the witness!
What we strive for is a balance between letting the respondent at least know the general topic of the study, but not providing them with detailed information that will be required to qualify. While at the same time not making a screening process so long and drawn out that the respondent feels they spent a lot of time and effort and provided a lot of information and then they don’t even qualify. Many of the panelists feel that when they provide that information and don’t qualify that their information is being used. We assure them that if they do not qualify for a study none of their information is being used. However you can understand why they feel that way.
So, as you work with different panel companies, take a look at their invitations. Make sure they aren’t giving away your screening secrets. And please, don’t make the screener longer than 5 minutes!