Is social media reach to aHUS patients and families hindered because of our disease’s rareness?
Rare disease patients are so few and maybe alone and attempts to contact them with important information are thwarted because of social media platform discriminatory policies.
Its a “catch 22”.
At meetings of rare kidney diseases, this is a common finding among kidney organisations.
So we asked this question to an AI “chatbot” to see if we were not just being “paranoid “. This is what it replied.
“Yes, social media platforms like Facebook and X (formerly Twitter) can make it difficult for posts from rare disease organizations to gain reach, primarily due to their algorithms and content prioritization strategies. Here are a few reasons why this happens:
1. Algorithmic Bias: Social media algorithms prioritize content that generates high engagement (likes, shares, comments) to keep users on the platform. Posts from rare disease organizations often cater to niche audiences and may not immediately attract broad engagement, causing them to be ranked lower in users’ feeds.
Global Action reaction: likes shares and comments depend on the content being sent out. If few people react favourably from the limited number reached because the content of the post is not interesting to them then there will be diminishing returns.
2. Sponsored Content Preference: Both platforms often favor paid or sponsored posts over organic content. Rare disease organizations, which tend to have limited budgets, may struggle to compete with larger organizations or commercial entities that can afford to pay for visibility.
Global Action Reaction: aHUS patient organisation are small and not well funded with limited budgets to buy reach, Also there is the concern that when reach is bought that it will always have to be bought or reach will revert.
3. Topic Sensitivity: Health-related posts may sometimes be flagged by algorithms as sensitive or triggering due to their content, such as discussions about illness or medical conditions. This can limit their visibility in some cases.
Global Action Reaction: Plausible but not all posts are sensitive or triggering of an upset in viewers but censoring stops awareness and understanding. The social media is full of triggering and upsetting images and content of a political nature but these are very popular.
4. Audience Targeting Issues: These organizations often target specific, small communities that may not overlap with the general interests catered to by broad social media audiences. As a result, their organic reach tends to be more restricted compared to mainstream topics or popular causes.
Global Action Reaction: Probably more so in Facebook and Instagram than X where rare disease organisations have a higher mix of clinical professional and academia. But Global Action tend to be more wide ranging including other kidney , complement and TMA subjects including links to the most popular disease of recent times COVID.
5. Changes in Platform Focus: Platforms like Facebook and X frequently change their focus, with increased attention given to video content (Reels, Stories, etc.), which might not align with the formats typically used by rare disease organizations, limiting reach further.
Global Action Reaction: It is not what you do its the way that you do it! In some ways this is in contrast with the topic sensitivity e.g. images of children in the midst of an aHUS crisis.
The underlying theme in the responses is that it is the fault of rare disease organisations that their message is not heard. They are not interesting nor paying enough. They are both too triggering of or uninteresting enough for the mainstream. Nor do they do it the right way.
So while aHUS social media may have one two or three thousand of followers the social media providers actively do not even feed information to them let alone the public.
In the new social media organizations often need to
-adapt to these challenges by using targeted adverts (i.e. paid for) ,
– have community-building strategies (and then retention – thousands of page likes/followers do not mean continuous reach by all- not just fatigue but the social media provider is not sending posts to the followers’ timelines)
-and have influencer partnerships to amplify their messages and gain more visibility ( have a celebrity affected by your disease but rarely is that sustainable).
aHUS awareness day is about getting an awareness message to the wider public domain as well as reminding those in the aHUS community itself that they are not alone.
Will all the aHUS community be doing just that on 24 September?
Even “a like” adds a little and many “littles” make a lot.
Article No.756
