Recently, one of our long-time clients asked for costing and feasibility for a leukemia study. We could only offer a small number of respondents, but at least we could help in a small way, so I sent off the proposal. After I hit send, it occurred to me that this client might not know about our Patient Advocacy Team or Referral Bonus. Sure enough, I followed the proposal up with these alternatives and she was very interested! I just assumed she knew that Rare Patient Voice had these offerings!
Rare Patient Voice is unique in many ways. We focus on patients and caregivers and are constantly identifying new disease areas and conditions our clients’ needs. We recruit the majority of our patients/caregivers in person so we know they are real. Also, when we bid on a project, we only provide feasibility based on what we actually have on our panel at that time.
But we do have a few more tricks up our sleeves. Since this client did not know about these alternatives, our other clients might not either so here is a primer.
Recognizing that you may need more respondents than we currently have on our panel, we can offer several alternatives. None of these is guaranteed to produce more respondents, but we have had success in many conditions.
First, we can reach out through our Patient Advocacy Team to see if they can post about the study on support group sites (with administrator permission). There is no cost for this outreach, and to date they have helped us find hundreds of potential respondents for studies.
Next, if your client approves, we can offer a donation to a national advocacy group ($2000) which gets passed through to your client in exchange for the advocacy group sending a message about the study to their membership. We have built strong relationships with many advocacy groups by attending their events year after year.
Finally, we can offer a referral bonus for qualified completes. The bonus is paid for qualified completes only:
While we do not build our feasibility with this outreach included, I can tell you that we have seen great results in some areas. For example, on a recent Hidradenitis Suppurativa quant study we had just n=40 patients on our panel, but the client needed more respondents. Our Patient Advocacy Team got to work and they were able to find another n=43 HS patients! On a recent Spinal Muscular Atrophy study, our client was holding off on offering a referral bonus. On the day before the study closed, they agreed to the bonus and we filled the study by the next morning! We can’t promise it will work, but it often does!
Rare Patient Voice is growing! We have added n=20,369 patients and caregivers to our panel since January of 2018! Check out our current counts at: https://rarepatientvoice.com/for-researchers/patient-panels/