Your Patient Voice Deserves a Paycheck, and Here’s What to Charge

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. But before we determine how much to charge for our 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 I first began my patient advocacy odyssey, I never even considered asking for compensation. I was simply trying to lend a helping hand in order to make a difference in the health community. What I quickly learned was how I was providing value to organizations and companies as well as my time and knowledge as a subject matter expert for free. Don’t get me wrong, I am not a patient leader for the benefit of money, but my expertise is providing value to someone else and therefore should be worth something. If we compensate key opinion leaders, then why not do the same with patient opinion leaders?

    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.

    As a fellow patient leader myself, I know 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 I know my time is valuable, this is something I still struggle with since I want to continue helping out my community. In these cases, I ask myself what other non-monetary value could be exchanged for my involvement in a certain opportunity – a free trip to the conference or convention, networking opportunities, testimonials, video content I can add to my website, and more.

    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. If you’re looking for additional resources, I recommend checking out the WEGO Health course, ‘Charging For Your Expertise As A Patient Leader.’ This course can provide additional insight on how to get started as a paid patient leader.

    Remember, your time and expertise is worthy of compensation!

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