Rare Patient Voice is now six years old. We’ve completed over 3,000 studies, we have 95,000 patients and caregivers, and are proud to have paid over 4.1 million dollars to patients for completing studies.
But as you might expect, many patients don’t know a lot about how it works. So let me tell you!
We get requests from market research firms for studies. They are reputable companies, who work with pharmaceutical and biotech firms, medical device manufacturers, and academic researchers. They are typically working on new treatments or programs and need to get the patient’s point of view. They let us know what kind of study it will be (telephone interview, online survey, in person, etc.), how long it is, and what kind of patients they are looking for. We let them know about how many we expect would take part in their study, and the costs and timing.
Once we are awarded a study, we assign a project manager. The survey sponsors write the survey and the screener and do the interviews. The project manager sends out the invitations to patients and works out the details of the project. We review the surveys to make sure they will work, but we don’t write them. And we don’t see the results. Just as the sponsors don’t receive any patients name or contact information! They only see an ID number. And let me repeat, we don’t write the screener – those are the questions at the beginning that determine if you qualify. If you don’t qualify, which I know is disappointing, your project manager can often let you know why.
Once a study is done, we confirm with the sponsor who has completed, and we pay the respondents. Each Friday, we send a list of everyone to be paid to our check processing company, and they send out the checks within a few days. They use the address that we’ve confirmed with you when you did the study. Once the checks are in the mail, we send an email to each person who took part letting them know when to expect their check. We want to make sure everyone gets paid. If you ever have a question about your study or payment, your project manager is the best person to contact.
The study sponsor analyzes the results of the study and they write a report for their client. They will summarize what they’ve learned and make recommendations about the new treatments or programs to make them better meet the needs of patients. So, your voice does matter!