Over the past year we’ve put a lot of videos about Rare Patient Voice on Linked In and Facebook. Each one kind of assumes you’ve seen some others and have a basic understanding about who we are and what we do. But that is a bad assumption. Every day someone new may see our posts. So, I thought it would be a good idea to take a step back and explain what Rare Patient Voice is.
Rare Patient Voice is a market research company. We have a panel of 100,000 patients and caregivers across over 400 diseases and conditions in the US and Canada. They have signed up with us to be invited to surveys, interviews, bulletin boards, advisory boards, any type of research method you might think of.
What makes us a bit different from other panels is that we go in person to patient events – walks, conferences, symposia. We sponsor the events, set up our table, and talk with the patients and caregivers. We explain that if they sign up, we’ll invite them from time to time to take part in surveys. We’ll send an email with the particulars. And we pay $100 per hour for their time. As a legitimate market research firm, we never share their names or try to market to them. We only contact them when we have a study that appears to match their disease or condition.
Most people are happy to sign up. They want to share their opinions about their condition, and they are happy to be paid! When folks are comfortable, they spread the word – to their support group, Facebook page, or relatives. That helps us find even more patients and caregivers. We also work with advocacy groups, not just to sponsor their events, but they also provide referrals.
The result is a panel of people that want to participate, so we get a high response rate – usually about 50%. And quick – most respond to our email invitations within a few days.
As our name implies, we focus on rare diseases. But over time, we’ve expanded based on patient and client demand to all diseases. I call it “medium rare.” We list diseases and counts on our website, and we also have a DIY proposal tool, called PAM, where you can check the feasibility and pricing for your needs. We also list our pricing on the website.
If you don’t see a disease you are interested in, please let us know. We are always growing our panel. And we may have them categorized a bit differently. We love to find out about new diseases/conditions of interest. It always pays off for us to grow them in our panel.
We provide patients not only to market research firms, but also to User Experience (UX) and Customer Experience (CX) firms, Health Economics Outcomes Research (HEOR), Human Factors, Ad and Marketing Agencies, and academics. As well as CROs. We are happy to provide various opportunities for our patients!