I’m often asked, “How do you become a patient advocate?”
You don’t need a degree to be an advocate. And you don’t need to spend money on expensive courses either! There are plenty of free resources to help guide you towards finding a career or hobby in patient advocacy.
The first thing to understand is that there are many different types of patient advocacy! Some advocates are patients themselves, others are caregivers, siblings of patients, or other community members who want to lend their voice and talents to the cause of promoting awareness, increasing disease understanding, and raising funds to research treatment and cures for a condition.
The other thing that’s helpful to understand is that advocacy is an industry of people devoted to using their skills to making the lives of patients better. What can you bring to the table to help in that effort?
For me, I knew that my skills were in writing, social media, speaking, and public relations. I was able to translate those skills into online resources like videos, books, and news coverage for health advocacy.
It’s also important to note that while there are patient advocates that work in clinical settings– like for hospitals, insurance companies, and with patients as clients– that is not the type of patient advocacy I do and some of those advocates may need degrees and specialized training to work in those settings.
Here are some sub-types of advocacy that you can focus your efforts towards: public speaking, patient influencing on social media, legislative advocacy, partnerships with healthcare and pharmaceutical companies for patient insights, nonprofit leadership, and developing skills to promote disease awareness through your own talent– like film and documentaries, books, articles and blogs, and other ways of communicating.
Patient Leader Certification Course through Health Union (A completely free 8-10 hour online course with accessibility options.)
If you’re looking for a free course to take to help you figure out what type of advocate you want to become, I would suggest taking the Patient Leader Certification Course. This was a course I helped develop and lend my voice to for the company I work for at my day job, Health Union. This course has advice, articles, videos, and voice notes that cover everything from leveraging social media and understanding the FTC guidelines for patient influencers, useful techniques for nurturing relationships in the advocacy field, to advancing health equity and promoting participatory medicine.
Register for the Social Health Network and begin taking the course.
Check out the FAQ’s for the course here.
Working with Non-Profits
Prior to my work at Health Union, I worked with different non-profit organizations including Global Genes, a rare and genetic disease non-profit. They offer a comprehensive library for patients who need assistance in their own situation as well as patients who are ready to be a part of the global solution. Check out some of their offerings below.
Becoming an Empowered Patient – A Toolkit for the Undiagnosed
How a Genetic Counselor Can Help You
Finding Your Fundraising Strategy
Using Storytelling for Awareness
Promoting Your Rare Disease Story on Social Media
The Feminist Bookshelf
If you’re interested in learning more about women’s health, here are some books to help you better understand the current landscape and how you as a patient and an advocate can make change in your life, your community, and in the way women are treated in the United States.
Surviving and Thriving with an Invisible Chronic Illness by Ilana Jacqueline
The Pain Gap: How Sexism and Racism in America Kill Women by Anushay Hossain
Generation M: Living Well in Perimenopause and Menopause by Dr. Jessica Shepard MD
Unwell Women: Misdiagnosis and Myth in a Man-Made World by Elinor Gleghorn
Legacy: A Black Physician Reckons with Racism in Medicine by Dr. Uche Blackstock
BLEED: Destroying Myths and Misogyny in Endometriosis Care by Tracy Lindeman (Canadian)
Note: I’m still continuing to include resources on this page, if you have suggestions please feel free to send them via email at ilanawrites@gmail.com with the subject line “Advocacy Resource Suggestion”. I am only including free resources at this time.