As of January 1, 2023, for new studies the honorarium for patients and family caregivers is $120 per hour (typically).
Who are Rare Patient Voice’s Clients?
We have worked with over 350 client firms. Many people assume our clients are the pharmaceutical, biotech or device manufacturers, but that’s not correct! Those organizations are often the end clients of our services, but we don’t usually deal with them directly. We work with market research firms, health economic outcomes research firms, ad and communications agencies, user experience agencies, as well as academics
Typically, our client will work with their pharmaceutical client to develop a study and create a questionnaire or discussion guide. Then the research firm comes to us to find the patients. Since we’ve already gone to hundreds of patient events to recruit, we can usually provide the patients (or caregivers) within two weeks. Infrequently, we work directly with a pharma or biotech firm, usually when they want us to recruit for an advisory board, which works great! But since we don’t create surveys or analyze the results, those firms need to employ a research agency to deliver the findings and insights they require. And many pharmaceutical manufacturers prefer to have that additional layer of insulation between themselves and the patients.
We continue to have more ad and communications agencies as clients. Not only do many conduct patient market research studies themselves, often they need to talk with patients before doing a client pitch. They’ll ask us to recruit 5 patients of a certain disease for phone interviews in the next 2-3 days. This helps them learn a lot about patient language and key issues so they can impress their potential clients! We are happy to help! We also work with academics: professors or graduate students that need patient surveys as part of their theses or work for publication. When they don’t have a budget, we’ll do these studies at no cost. While they can’t offer our standard honoraria of $100 per hour, they can offer a summary of the results, which many of our patients find enticing.
With health economics outcomes researchers, the studies are often IRB approved. We are happy to comply with the protocols, and our panelists enjoy these studies as well.
We keep finding new clients – or maybe I should say new clients keep finding us! We meet many at healthcare market research conferences, such as Intellus, the DTC National, IIex Health and now at general market research conferences where we exhibit, such as QRCA, Quirk’s, IIex, TMRE, AAPOR, etc. Firms that do consumer research often also do some patient research. But nothing seems to beat word-of mouth. Most new clients tell us they were referred by someone else they know and trust!
