Rare Patient Voice Interview

Posted on April 30, 2017

We recently conducted an interview with Wes Michael, President & Founder, Rare Patient Voice, LLC, to gain some insight into how they give patients and caregivers with rare diseases an opportunity to express their opinions and voice their thoughts to help improve medical services and products.

Tell us about the types of patients and conditions Rare Voices includes?

We cover nearly 200 diseases/conditions (see www.rarepatientvoice.com/for-biopharma-and-market-researchers/ for a list).  We started in 2013 in only rare conditions like Hemophilia, Sickle Cell, Gaucher, etc. But we’ve been getting requests for less rare conditions, like Diabetes, Rheumatoid Arthritis, HIV, so we are accepting patients and caregivers with all conditions and diseases. We also have different groups like wheel chair users, who may have any of a number of conditions.

Why should market researchers looking for certain disease states keep Rare Voices in mind?

Two key reasons: quality and speed. Quality because we recruit at patient events like walks and conferences, so we’ve met them and they are authentic. And patients refer other patients, who are also authentic. Speed because they have signed up to participate, so they respond within a few days to our email invitations.

Share one recent “wow” project that you were able to help researchers and pharma teams make happen.

For a Lupus project, they wanted 8 who use a certain medication with low incidence. We estimated we might get 5-8, and we got all 8. The client said, “This recruit surpassed anyone’s expectations. From my skepticism to your bid assumptions, none of us thought we would fill the quota, but we did, and with terrific respondents.”

How do you find patients to be a part of the panel?

This is our point of difference! We recruit patients at patient events like walks and conferences. We sponsor the event and have a table or booth where we meet the patients and their families and explain what we do. Most want to join, and we email them a gift card to join. Once they are comfortable – maybe after they’ve done a study, enjoyed it, realize they aren’t getting any marketing calls, and they get paid quickly and well ($100 per 60 mins of their time) – they spread the word to their support groups, family members, closed Facebook pages, etc. We also give a gift card for these referrals. Some advocacy organizations also spread the word, and we give them a donation for those who sign up.

Tell us about all the travel you’ve been doing in the last month.

Let’s see, over the past few weeks (and next week) I’ve been to San Antonio (Ataxia), Atlanta (Sickle Cell), Baltimore (Diabetes), Timonium, MD (disabilities), Washington DC (Orphan Drug Conference), College Park, MD (Lung), Orlando (PMRG), Baltimore (Lung), Cincinnati (Fabry). Whew! And my colleagues were probably in an equal number of places.