Knowing Your Worth: Tips for Being Compensated for your Patient Advocacy

When you’ve lived with a chronic illness for years, it’s safe to say you become an expert on your condition and have earned the title of “professional patient”. If you decide that you want to start sharing your story and experiences and have interest in being a part of the patient advocacy community you may wonder what it takes to level up and start to not only find purpose from your pain, but also profit. Becoming a leader in patient advocacy requires a combination of compassion, communication skills, and a commitment to making a positive impact on healthcare. Whether you are advocating for yourself or for others.

Anytime you are approached by a business or company looking to tap into your expertise regarding your patient experience, take a step back and think about all you’ve endured and gone through to be able to speak on this subject. Your intel and perspective are invaluable. It’s needed. This type of unique information and behind-the-scenes understanding of your chronic illness comes with a price tag. Unless it’s a non-project or a fellow patient advocate you are helping for a quote, podcast, or content collaboration, it’s important not to sell yourself short.

Being compensated for your time and talents

When you’re new to the game you may want visibility and be willing to offer up insight, your time, and your energy to participate in as many projects as possible. But once you’re established, you come to realize you deserve to be compensated for others using your likeness and your story to reach others. Anytime you share a post on your social media, that business is tapping into the community you’ve cultivated and reaching your followers, without having to do any work. Think of it as free advertising. By sharing content—these companies are utilizing your credibility. You don’t want to promote a product or a study if it does not align with your values.

If you start being an affiliate for every single company that reaches out to you, it makes you seem disingenuous to the patient community. I’m very picky about what I choose to promote because it’s a reflection on me. If I haven’t tried a supplement or a smoothie, I refuse to promote it. Whether it’s market research, usability studies about injections, writing articles for digital health websites, or participating in video shoots, you should expect to be paid for your time and your talents. Each time you share your personal health journey, you have to go to a place that’s often trauma-filled and unpleasant.

Building a rate sheet for your services

I’ve found it helpful to have a rate sheet that lists my compensation expectations so that when I receive an email inquiry or I’m on a Zoom call I can be transparent then and there what my expectations are for compensation. This shifts and changes with time—but you can begin by coming up with your hourly rate. I’ll say right now, it should start at $100 an hour, at least.

Then, create rates for different types of projects you may be approached on:

-drafting a blog article

-giving a speech

-creating social media posts and crafting the content

-sharing a reel and creating the caption

-participating in a podcast

-being a part of a video shoot

-doing an online panel alongside other advocates

-Facebook and Instagram lives

…the list goes on and on.

My blog, Lights, Camera, Crohn’s started in July 2016 and anytime I’ve done a sponsored article I let clients know that the social media posts that coincide on Facebook, Instagram, Twitter, and LinkedIn are included and a package deal with the article.

Getting paid for health advocacy work involves defining your services, establishing your value, and creating a business model that allows you to monetize your expertise and assistance. Patient advocacy is a continuous learning process. By staying informed, building a supportive network, and actively engaging with the healthcare community, you can make a meaningful impact as a patient advocate.