So, You Want To Be a Patient Advocate: Tips for Taking the Plunge

Starting anything new can be daunting. One of the most frequent questions I receive from those wanting to break into the patient advocacy space is how to get started, how to build a following, and how to get paid for the invaluable work you are doing. There isn’t one correct answer or strategy for this, but it does take time, hard work, and patience.

Prior to becoming a patient leader, I spent the first decade of living with Crohn’s disease in silence. I wasn’t aware of what advocacy entailed or that it even existed to be quite honest. Back in 2005, Facebook was just launching. You didn’t have patient advocates in disease spaces sharing their journeys and available right at your fingertips.

That first decade I worked in TV news as a reporter, producer, and morning news anchor. Little did I know that my love for storytelling would one day lead me to becoming a blogger and patient advocate in the inflammatory bowel disease space.

Getting started as a patient advocate

It’s important to think about what your strengths are and what you enjoy doing. If you love writing, blogging, and creating content for digital health companies will be right up your alley. If you enjoy making videos and being on camera, reels may be for your forte. If you love to dig deep and have conversations with people, podcasting may be a good fit.

If you’re passionate about creating an organization to help your community and drive change, a non-profit may be a good idea. Ideally with your social media presence you want another avenue to direct your followers to whether it’s a blog, website, podcast, or nonprofit.

Prior to starting my blog, Lights, Camera, Crohn’s, I spent nearly a year socializing names for my website with several friends and family members. I had people vote many times and it became clear what resonated. From there, I went on to build my editorial calendar.

The journalist in me loves to come up with topics and story ideas. By doing this, you take a bit of the stress of producing content ideas on the fly and you’ll feel more organized with your thoughts and the information you’re disseminating.

Knowing what to share and when

As you start to develop and create your content think about your main pain points, what you’ve learned along the way, what you think will benefit others, and let that guide you. Rather than making your advocacy all about yourself, use your story as the framework of understanding, but not the full story.

Always keep your eyes and ears open, you’ll come up with story ideas by keeping a close pulse of what’s being talked about on social media, what questions people may be asking in their Instagram stories, and if you run up against a roadblock in your own care.

It takes time to build a following both on social media and with blogs and podcasts but be patient and don’t lose hope. The more your post, share and engage with others, your name will get out there. Don’t allow “likes” and “follows” to deter you. I know it can be disappointing and stressful when you put your heart into an article, and it doesn’t get the love you think it deserves.

Find comfort in knowing that at some point, someone will come across that interview or that article and that information will help them more than you can know. You must trust the process and allow your ego to take a hit at times.

Using social media to your advantage

Anytime I write a blog article I write social media posts to coincide with it to help spread the word. This is how you promote your work and get noticed. Instagram captions read differently than X or Facebook. For Instagram, I try to write an engaging hook that asks a question or asks people to include an emoji in the comments.

If you’re wondering what topics are of interest, you can do a call out for story ideas or poll your followers. If you want your followers to get to know you better, you can do an “Ask Me Anything” question box in your IG Stories to better engage with your followers.

Connect with and follow other patient advocates and use hashtags to help get your posts where they need to be. As you grow your own community, you’ll feel much more supported and energized about being an advocate. Please don’t look at fellow advocates as a threat or competition, there’s plenty of room at the ever-growing patient advocacy table. Nobody garnered their following from “luck,” we all had to start somewhere. Don’t buy followers, grow organically and be real.

Making money while you advocate

One of the biggest misconceptions is that patient advocates make a ton of money and that it’s about being in the spotlight and all glitz and glam. Couldn’t be further from the truth. Yes, it’s possible to be compensated and I’ve managed to make it my career as a stay-at-home mom of three, but if I were living on my own and trying to live off my advocacy work, I would need to put my kids into daycare. Patient advocacy is a 24/7 role. There’s a ton that goes on behind the scenes. I spend several hours a week direct messaging people back when they ask questions or need support, out of the goodness of my heart.

Most of the blog articles I write are not sponsored. You must be selective of when you do sponsored content and who you align with. Your credibility is fragile and always at stake. If people see you promoting products left and right that could be detrimental to patients, it takes away from how genuine you come off. I only collaborate with organizations that I support and only share a product if I personally use it and have seen benefit, which is rare.

Think of yourself as a health consultant. Once you have a presence on social media, you will start being invited to sit on Advisory Boards, do speaking engagements, and participate in market research opportunities. Do not sell yourself short. Your time and intel are priceless.

Anytime a business (not a non-profit) reaches out to use your story or likeness, which comes with a price tag. This does not pertain to media outlets. It’s great to participate in magazine articles, TV, and radio interviews, and offer up quotes here and there to help get your name out there. This visibility is huge and helps you reach more people.

Knowing what to charge

When you start out and as your advocacy journey continues, you’ll want to have a “Rate Sheet” for yourself. Think about how much time and energy goes into sharing a social media post and what you would charge for that. Consider what you feel comfortable making your hourly rate be, I’ll say this...it should be at least $100 an hour, even if you’re starting out. Consider what a sponsored blog article should be and have all this written down so that when you are approached, you are confident in sharing what you charge.

You should never be made to feel like you aren’t worthy of compensation. These companies and businesses need your story. Shoot high. In the worst case, they’ll say they can’t pay that much, and they’ll offer up another number. There’s always room for negotiation and the people coming to you have a budget in mind. Just because you may be green in your patient advocacy doesn’t mean you should be doing everything for free. My dad has always taught me to “Go for the Gusto” and that’s led how I take o