You may already know that we recruit many patients and caregivers personally at patient events such as walks, conferences, and educational forums. But did you know that we also get many panelists from patient/caregiver referrals?
Patients tell us they enjoy the experience, providing their opinions that will help other patients, and being treated confidentially with respect. We pay them by check as soon as the study is concluded. After a study they are more comfortable, and many respondents then refer others. Some are in support groups, and they spread the word to their group. Others are in Facebook groups (it seems the rarer the disease, the more patients and caregivers are connected online to others). The referrer receives a gift card for each referral. (Note, we don’t let anyone send us another patient’s name. Referrers have the other patients contact us, so that patients can decide for themselves if they would like to join, and their privacy is protected.)
This word of mouth (both physical and digital) is very powerful. We tell our patients, “Your word of mouth is better than our word of mouth.” At a recent Hemophilia B patient conference, one caregiver came up to our table and told me to “shut up” so that she could explain the benefits of RPV to other patients. And she was right! Who has more credibility with patients than other patients?
Another benefit to patient referrals is that it broadens the type of patients/caregivers in our panels. If we only recruited from patient events, we would only have the most involved patients/caregivers. And only those from major metro areas. However, with the help of referrals, we obtain those who are less involved. And it helps us find respondents from all across the US.
Finally, we find those who are referred are every bit as authentic as those we meet in person. Patients refer authentic patients. So it enable us to maintain panel quality as we grow our panels. And we can also identify some of the real leaders among patients, those who refer many others.