5 minute read
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
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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?
T H E P O W E R O F 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.
T H E P O W E R O F INSTAGRAM
Finally, for advocates who do have a larger platform, making a living through Instagram and blog advertisements is another option. Pippa also works with brands to run advertisements on her Instagram account (@lifeofpippa) and believes influencers with disabilities and chronic conditions offer a new way of marketing for many brands, as she explains: “Healthcare brands offer brilliant services and working with more diverse influencers can offer an ideal tool for opening up a brand’s marketability to a much wider demographic.”
Georgina Grogan, who has chronic back pain and chronic fatigue syndrome, agrees: “I started a blog seven years ago and it’s completely my life now! I’m tired and in pain all day long but being my own boss through my blog means that I can still make a living in those hours where I feel awake enough to get things done!”
Georgina works with relevant brands on her blog shemightbeloved.com and on Instagram @georginagrogan_, where she has an impressive 32,000 followers. She explains that sponsored content can also really benefit her audience.
“I worked with a water supplier to promote the discount that can be applied for by those with chronic illnesses; lots of my readers had never heard of it and were so grateful! Brands are reaching a wider audience than if they were to work with abled people, as people follow people who represent them,” she adds.
T U R N I N G C O N T E N T INTO CASH So now you know what a patient advocate is, how can you make a living from it? Here’s our top tips...
Lots of companies specialise in connecting patients with healthcare companies for clinical trials and market research. These include WEGO, Merakoi and Health Union (who also regularly recruit patients with different health conditions to write for them).
Approach small businesses who cater for those with your condition and see if they’d be interested in partnering. This might be writing for their site, a 1-2-1 chat or a whole range of other possibilities.
Work closely with relevant charities. It might not be paid but it’s a great way to get experience.
Start your own blog to talk about life with your condition. Once your blog is more established there’s several ways to earn from it: such as advertisements or self-publishing your own book. Looking to get started? Pippa Stacey advises to think about what makes you unique and states on her website: “Think about what the world can learn from your experiences; your own unique story is what lends power to the points you’re making.”
ABOUT JENNA Jenna is a freelance journalist who lives with Crohn’s disease. She also runs chronicillnessbloggers.com, which is a community for bloggers with disabilities and chronic illnesses. You can follow her on Twitter @jennafarmeruk.
