Patient advocacy groups have long used social media as a means of spreading awareness and education among themselves but also to the mainstream. This is especially important during the current COVID-19 pandemic because it gives the patient advocacy community, especially those involving rare conditions, the chance to express unique the challenges they face during the current crisis.
So, the question you need to ask yourself – are you using social media effectively right now to better represent your patient community?
There is no right or wrong way to use social media successfully, but it is apparent when reviewing some of the advocacy groups, that some are doing a better job than others to achieve their goals.
The non-profit, Beyond the Diagnosis, is an example of a rare disease advocacy organization that successfully uses social media. Rather than attempting to stay present on all social media platforms, Beyond the Diagnosis focuses on Instagram and Twitter since they use visual arts as a means of advocacy rather than lengthy storytelling. It would not make sense for this organization to spend a lot of energy on Facebook – a platform better suited for sharing longer written posts. By focusing their attention on platforms that complement the unique strengths of their organization – namely their passion for visual art – they are more efficient advocators and, thus, appear more competent as an organization. This is likely why Beyond the Diagnosis has gained a significant following including people outside of the rare disease community. This following has gotten them the attention of institutions like Harvard and the NIH – institutions that have the means and cultural influence to make substantial change for rare disease patients.
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May is Ehlers-Danlos Syndrome Awareness Month. I was honored to unveil this portrait of Haleigh & Avee at the FDA. Haleigh & Avee are EDS warriors. Their portrait was painted by Robert Francis Whelan and has also visited the Broad Institute of MIT and Harvard and Children's of Alabama.
In essence, advocacy groups should take the time to understand the capabilities of each platform and use their chosen ones accordingly. One group that demonstrates successful social media use – despite a smaller following – is the Cooper Robertson Foundation, a charity raising funds and awareness for Tuberous Sclerosis Complex in Canada. Like Beyond the Diagnosis, the Cooper Robertson Foundation is not on every social media platform but instead uses their Instagram and Facebook pages in ways that use each respective platform efficiently.
Other patient advocacy groups are more clinically based. For them, Twitter and Linkedin may be more appropriate as hyperlinking to research articles is more convenient on these platforms. A group that often uses Twitter to share clinical trial updates, for instance, is Jesse’s Journey, a charity committed to funding research for Duchenne Muscular Dystrophy. By posting easy-to-access articles with concise descriptions, they are able to efficiently inform their audience.
“Because the cardiac function is so vital to those affected by #Duchenne, we’re passionate to learn more about the #heart and edasalonexent in our Phase 3 PolarisDMD trial." Read more about the latest from @CatabasisPharma: https://t.co/BElyi72taB pic.twitter.com/Yr1Bcr0qbT
— Jesse's Journey (@Jesses_Journey) February 28, 2020
In conclusion, mastery of social media as a patient advocacy tool is crucial, especially now as more people turn to online resources for medical information. Luckily, efficient social media use is rather straight-forward as long as you use platforms that showcase your strengths and in turn utilize the strengths of said platforms. From there, the best thing to do is to post content that appeals to your intended audience and do so regularly.