We have to get past what Amy Farber had to say, For the past five years Amy Farber has been battling not only her own disease but also the wall
of resistance erected by those who believe that a patient can make about
as much of a meaningful contribution to the process of scientific
discovery as a laboratory rat. LAM, lymph-angiolio-myomatosis. She
co-invented a revoluntionary web service with MIT Media Lab that enables
patients to participate in the search for their own cures.
Very obviously nothing I've done in the past 12 years has made a bit of difference in stroke, but I'm persistent. Hell, I'm worth more that any stroke association leader out there, they do nothing to solve stroke!
The Patient Voice Deserves a Paycheck: Here's What to Charge
Last updated: December 2023
Time and time again, we hear the question, "How much should I charge for my patient advocacy expertise?" It's an ongoing and worthy debate for Patient Leaders in the health space.
Before we determine how much to charge for Patient Leader services, we first need to understand the following:
- What type of service are you offering? (i.e., blog post, speaking engagement, feedback on clinical trial design/protocol)
- Who (or which company) is requesting this service? (i.e., pharmaceutical/biotech, nonprofit organization, medical school)
- How much time will you need to perform the (tasks involved/service), including any prep work? (i.e., one-time or ongoing engagement)
When you first began your patient advocacy odyssey, you may have never even considered asking for compensation. Perhaps you were simply trying to lend a helping hand in order to make a difference in a health community. What many quickly learn is that you are providing value to organizations and companies as well as your time and knowledge, as a subject matter expert, for free. While being a Patient Leader isn't all about money, your expertise provides value to someone else and is therefore worth something! If we compensate key opinion leaders, then why not do the same with Patient Opinion Leaders?
Fair market value calculator
To determine how much to charge for your advocacy work, there is now a fair-market value calculator that the National Health Council created to demonstrate how much a patient or caregiver should be getting compensated. This calculator can provide evidence on your reasoning behind charging a company or organization the amount you requested.
Fellow Patient Leaders have shared with us that it's often easy to undervalue your expertise or be willing to do something for free, especially if it's for a nonprofit organization in your community. Even though you know your time is valuable, this may be something you still struggle with since you want to continue helping out your community. In these cases, you can ask yourself what other non-monetary value could be exchanged for your involvement in a certain opportunity - a free trip to a conference or convention, networking opportunities, testimonials, video content you can add to your website, and more.
You're valuable
Ultimately, it's important to know your lived experience as a patient and/or caregiver is valuable, especially if it benefits another organization or company.
Remember, your time and expertise is worthy of compensation!
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