Recruiting patients and caregivers in rare and orphan diseases for market research, post-marketing surveillance studies, and outcomes studies 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. We:
- Partner with advocacy groups
- Attend patient-oriented events
- Obtain patient referrals to other patients
- Use social media (Facebook, Twitter, etc.)
This active approach takes time. We invest the time now so patient panels and caregiver panels are ready when you need them. 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.
Here are our current Canadian patient and caregiver counts:
|Sarcoma – soft tissue||5|
|Skin Cancer – Melanoma||8|
|Skin Cancer – non-Melanoma||1|
|Deletion Duplication Syndrome||4|
|Human Growth Hormone Deficiency||6|
|Spinal Muscular Atrophy||12|
Our partnership with WhatNext, the exclusive social health network of the American Cancer Society, makes available 32,000 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; cancer patients come in through the American Cancer Society website; we ask physicians and pharmacists to refer patients with the desired specs to us; and our reliable panelists refer others they know with like conditions
- 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.
- Review of data– We gain agreements from our clients to review survey data to make sure it aligns with other information about the respondents; and we apply our knowledge of the condition and its treatments to flag possible fraudulent respondents.
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 30 years in market research experience on both the client and supplier side, we are happy to give you advice on the design of your research. And since we know our panelist very well, we can advise you on the best way to work with them to get the insights you and your clients require.