THE RISE OF THE
PATIENT ADVOCATE BY JENNA FARMER Jenna explores what it takes to become a patient advocate and how you can make a living from it Chances are that if you’re looking to buy a new outfit or need some recipe inspiration, you’ll head to the internet. After all, most of us look to influencers or online experts to guide us through life: whether it’s tips on how to bake the perfect loaf of bread or an everyday make-up tutorial. However, some use their online presence to chronicle an altogether different reality. Patient advocates are those who use their platform to share their daily lives of living with chronic illness or disability. They shine a spotlight on all the different aspects of their daily lives: whether that’s accessible travel, tips for changing a stoma bag or a Q&A about their condition and (where relevant) treatment plan. Such is the demand for these advocates, both from their audience and healthcare brands who work with them, that some people are managing to turn this role into a full-time career. But how does patient advocacy work and how can you become one?
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...how does patient advocacy work and how can you become one?
THE POWER OF PATIENT INSIGHTS You don’t necessarily need a huge following to become a patient advocate. After all, your most valuable commodity is your voice, which comes from many years of living with a condition or disability. This insight is extremely valuable for brands; who work with patient advocates in market research to help improve their products and messaging. Sahara Fleetwood-Beresford lives with inflammatory bowel disease (IBD) and works as a freelance ‘IBD expert’ through the company Merakoi - an organisation who connects brands with patient experts. “I’ve been working on a project with a pharma company for a year. The first phase was helping them identify the unmet needs of IBD patients and coming up with ideas for solutions that might fill that gap.” Sahara is paid for her freelance role and joins in with all kinds of business activities, including in-person workshops as well as sharing insights via voice clips that are used in internal meetings. “My work is ensuring that the core story and messaging will resonate with the community. They’re very good in the sense that if I say ‘I don’t think that’s a good idea’ they listen to my input.” Not only is this role a way to make a living but it can also potentially shape healthcare and the treatment other patients receive.
CREATING CONTENT
Other advocates help brands with their content by using their writing and social media skills to help write content for healthcare companies’ websites. Pippa Stacey has ME and writes a monthly column for a mobility brand as well as having her own blog (lifeofpippa. co.uk). Her most popular post being a feature entitled ‘Powerchairs Aren’t Just for Elderly People’ which features lots of chronic illness influencers and their powerchairs. This is an ideal way for advocates to use their creative writing skills and it ensures healthcare brands have plenty of authentic content.
