For Researchers

"Also, it has been a pleasure working with you and Rare Patient Voice. Y’all made it easy for us to quickly turn around some research in a tough to find audience. Thanks!"

Recruiting patients and caregivers for market research, health economics and outcomes research has been a challenge over the years. Prevalence rates are small enough that the passive approach of the large consumer panels can’t recruit sufficient sample. We’ve learned through experience that an active approach is necessary. Rare Patient Voice:

• Partners with advocacy groups.
• Attends patient-oriented events
• Obtains patient referrals to other patients
• Uses social media (Facebook, Twitter, etc.)

We invest the time now so patient and caregiver panels are ready when you need them.
This active approach takes time. And it doesn’t apply just to patients with rare disease — it works with other special patient populations where an active recruiting approach is needed.

Our partnership with WhatNext, the exclusive social health network of the American Cancer Society, makes available 38,000 cancer patients and caregivers for qualitative and quantitative research. For each type of cancer, patients are identified by stage of cancer, stage of treatment, age, and geographical location.

Clients continue to tell us how impressed they are with the high quality of our respondents. This is a result of:

• Source - we recruit patients personally at advocacy events and other patient events. We partner with online advocacy and support groups.
• Vetting - We vet each patient and caregiver who signs up both manually (looking at the answers to questions about the condition and treatment) and technologically (does their contact information match independent sources? are IP addresses unique?). If unsure, we contact the patient directly and discuss. Amazing how fraudulent entries will simply go away.

These practices set our respondents apart from those screened across the general population (“please check all the conditions you have”). It takes more time and attention, but we feel the highest quality data is certainly worth it.

With more than 40 years in market research experience on both the client and supplier side, we are happy to consult with clients on study design. Since we know our panelists very well, we can advise you on the best way to work with them to get the insights you and your clients require.

Ready to get started?