5 Tips for Writing Effective Patient Advocacy Content

Whenever I receive pamphlets and updates in the mail from charities I support, I read about people who’ve benefited from these charities. Whether about recovering addicts, cancer survivors, or cardiac patients, these stories try to bring the human to the condition.

One thing I have noticed, though, is that these pieces often focus more on the condition than on other aspects of a person’s life.

Logically speaking, this makes sense: you’re trying to draw attention to the condition for which you’re raising funds, perhaps for research or support initiatives. However, by focusing on a person’s other qualities while discussing the condition, you give readers more common ground to connect with the person and, hence, your organization.

In this blog post, I offer five tips to improve your patient advocacy writing.

Tip 1: Honour the Patient

This tip is actually more a commandment. Whatever you write, it must honour the person you’re writing about.

The following four tips support this first one.

Tip #2: Use Accurate Terminology

Advocacy involves educating and creating empathy (not sympathy). You do that by not only honouring the person you’re writing about, but also by educating your readers about different terminology.

This doesn’t mean everything you write has to be positive. As we all know, living with any kind of condition has its negative sides. But whatever you write about the patient, you want them to have a positive emotional reaction to the piece.

When you’re interviewing someone with a condition, don’t assume that how you refer to people living with that disease is how they wish to be described, even if relevant associations say it’s the correct terminology.

For example, I’ve noticed in my online engagement with the epilepsy community that those in North America refer to themselves as “people with epilepsy.” However, in the UK, Middle East, and Africa, many people with epilepsy refer to themselves as “epileptic.”

This difference in terminology isn’t a hard-and-fast rule. I raise this point to show that within a community of 55-65 million people, preferred terms vary.

As part of honouring the person you’re writing about, ask what terminology they like to use. If that terminology may cause issues for the audience you’re writing for, explain in your patient advocacy content your reasons for using those words, and continue writing.

Tip #3: Discover a Patient’s Hobby or a Personal Interest

Taking time to interview someone until you learn a bit about their personal life helps you in two ways:

  1. This personal side of the patient can give you a framework for the entire piece.
  2. Adding in these details can help you connect with your readers.

Disability and illness often cause discomfort in the reader, which can act as the metaphorical rock that helps people pretend an issue doesn’t exist.

But don’t leave the interests for a paragraph that reads like a laundry list of “things this person likes to do.” Incorporate them into your writing.

For example, when I wrote about a boy with a severe form of epilepsy likely caused by an extremely rare gene variation, his mother told me he loves to look at all the pictures in a book. She sent me several photos of him paging through a book, his eyes alight as he studied the images.

Reading became the theme of the piece, more specifically, a show about reading I used to watch as a kid.

This way, I could structure this family’s experiences with their son’s disability into an uplifting piece that honoured everyone involved but still educated.

Tip #4: Replace Abstract Concepts With Concrete Details

Many conditions cause pain, discomfort, confusion, anger, frustration, and myriad other abstract sensations.

But how angry is someone? How much pain do they experience, and where do they experience it? What do they find confusing? Even though we understand these words, they don’t exist in a visceral experience for readers.

For example, saying John Smith “lives with severe pain” lacks the power of saying, “Every day, John Smith feels hammers tapping away at nails piercing his entire body.”

Not a comfortable image, is it? But evaluate how these variations on the same sentence describe a person’s pain:

  • baseballs whacking her from every direction
  • rain made of thumbtacks dropping onto his head
  • the whitening tips of her fingers stinging as though affected by frostbite, even in the summer sun
  • fires emanating from his bones and burning their way through his skin
  • a rope pulling so tightly around their muscles that the pain immobilizes them

Adding a concrete detail to an abstract sensation can help readers better understand a patient’s journey.

For example, my type of epilepsy causes seizures that generally last under five seconds. The catch? I have dozens a day. I once attempted to count and noticed 37 seizures. However, these seizures can happen without my awareness, so the real total is much higher.

(Off medication, the seizures cluster if I wake up in the wrong phase of sleep. I can have five or more seizures within as many minutes. Stringing a sentence together or remembering any conversation when your brain is waving jazz hands inside your skull is difficult.)

Even if we assume four seconds per seizure and 60 seizures a day, that amounts to a mere four minutes. Doesn’t sound like much, does it? Even if we add in the approximate 10 seconds I need to remember what I missed, or the 20 seconds someone spends catching me up on what I’ve forgotten, we’re looking at 10-20 minutes.

How many people daydream that much? Probably many.

The following example, though, illustrates more effectively what missing four seconds in a day can do to you: In my 20s, I was racing down a hill on my bike (I don’t drive), approaching a major intersection. My light was green, and I believed I’d make it. As I sped through, cars honked at me. I looked up, and the light had turned red.

I can only thank the drivers for being alert enough to not run me over.

Most people fear being hit by a car. Explaining how that almost happened to me because of a seizure that lasted a few seconds connects with that.

Tip #5: Always Finish With Hope and the Sense of Moving Forward

A man I interviewed in his 50s who lived with cancer loved baseball. I used his interest to highlight his journey, including all the efforts he put into patient advocacy.

My last paragraph finished with him metaphorically rounding the bases as he aimed for home plate: when all Americans know to get screened for colorectal cancer, and when the American government has put programs into place to do so.

Reviewing Your Own Patient Advocacy Content

When you edit your work, especially if you’re a novice writer, give yourself a day or two between your first draft and your first revision. Create a checklist of these tips, and as you read through your piece of content again, measure it against your checklist to see if you’ve written about the person well.

Make major changes first, then begin fine-tuning sentence structure. Set it aside for at least another day, then proofread it. Ideally, you’ll have a trusted colleague who can proofread it for you.

Following these tips on creating meaningful patient advocacy content can hone your writing to a more human-centric piece. Let me know how it goes, or drop me a line for any quick questions!


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