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Rare Patient Voice

Helping Patients with Rare Diseases Voice Their Opinions

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Helping patients and caregivers share their voices

Time is Money!

November 5, 2017 Wes Michael

As of January 1, 2023, for new studies the honorarium for patients and family caregivers is $120 per hour.

I was recently invited as a consumer to take part in a 15-minute online survey for a reward of $1.63. Let’s see, that would be $6.52 per hour, less than the minimum wage of $7.25 per hour. Doesn’t seem like a great deal to me, but at least the terms were clear.

We pay our panelists – patients and caregivers – $100 per hour of their time. So, a typical 60-minute telephone interview pays $100, a 30-minute online survey pays $50. This is much appreciated by our panelists. Some certainly don’t need it, but others tell us how helpful it is, getting them through tough times. And all appreciate being respected.

And we pay by old-fashioned check. Our panelists tell us they prefer a check – gift cards don’t pay the rent or co-pays. And we pay quickly, as soon as a study is complete, or sooner if it drags on for several weeks.

I think there is also a benefit to our clients to these generous payments. People value what they pay for, and I think the opinions and experiences of our patients and caregivers carry more weight than if they had been offered $1.63.

As always, our panel counts in over 300 disease categories may be found here: https://rarepatientvoice.com/for-researchers/patient-panels/ . We’ve been growing many panels, including Sickle Cell, Spinal Muscular Atrophy, Diabetes, and Mental Illness.

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