Patients and carers
How it works for patients and carers
Your experience of living with a condition, or caring for someone who does, helps shape better treatment and care.
1. Who can join
Adults aged 18 or over living in the United States who live with a health condition, or who care for someone who does. Joining is free and takes a few minutes.
2. What the studies are like
Most studies are online surveys about your condition, treatment and care. Some are interviews, online groups or diaries over a few weeks. Each invitation tells you what it involves, how long it takes and the fee before you decide. There are no right or wrong answers, and you can skip any study.
3. Your health information
To match you to studies about your condition, we ask which conditions you or the person you care for live with. This is optional and needs your explicit consent. It is stored securely, seen only by the few staff who need it (every view is recorded), and never shared with clients with your name. You can change it, or withdraw your consent and have it deleted, at any time from your account.
4. Fees and payment
Each study pays a fee for your time, shown in the invitation. Once a completed study is approved, the fee is added to your account. You can ask for payment once your approved total reaches $100, by PayPal, bank transfer or gift card, or ask us to donate it to a health charity in your name. The full detail is in the payment terms.
5. If you care for someone
Carers have their own membership. Studies ask about your experience of caring, and sometimes about the health of the person you care for, so please only share what they would be comfortable with. We never ask for their name.
6. Side effects
If you mention a side effect of a medicine in a study about it, we must pass it to the manufacturer, without your name unless you agree. How adverse event reporting works. If you are unwell, contact a doctor or pharmacist, or call 911 in an emergency.
7. Leaving
You can delete your account at any time from your account settings. We erase your personal and health information, and keep only the payment records the law requires, without your name.