Before I get into the nitty-gritty of how you can support the patient community this month, there’s an opportunity (U.S. only — I plan to share some non-U.S. opportunities next month) for anyone interested in providing beta-user feedback for an NIH website that’s updating its pages on genetic and rare disorders. It takes about an hour, is NOT specific to XLH, and involves a video meeting during which you try to find information on the site, and offer feedback on what’s easy/hard/confusing/etc. The people doing the program are very nice and also organized, making the session go very smoothly. Contact me at gin at ginjones dot com if you’re interested, and I’ll connect you with the person in charge of the project.
Now, for a more general discussion of an action you can take to support the chronic hypophosphatemia patient community. This month, I’m focusing on a really tiny action that has a disproportionately huge effect. Most of my examples will be from Facebook, but similar rules apply to Twitter and LinkedIn and likely in other current and future platforms.
It’s a really simple action I’m asking you to take this month: whichever social media platform you use, make a commitment that whenever you see information about chronic hypophosphatemia (or rare disease in general) from a reliable source, you will routinely “like” it and, ideally, also share it. If the post is particularly good, then post a quick comment saying so. Even a quick emoji counts as engagement, if you don’t have anything more substantive to say.
Why commit to the liking/sharing/commenting? Because social media is all about engagement — it’s both the fuel and the desired end product. A post with good early engagement gets shown to more people, who are then likely to engage with it too, causing the post to get shown to even more people. The inverse is true too — a post that gets little initial engagement doesn’t even get shown to anyone else, and dies before it has a chance to be seen further.
Remember when you signed up to follow the page of the patient advocacy group of your choice (like The XLH Network, The XLH Alliance, or the Canadian XLH Network)? You may have expected that after doing that, all of their posts would show up in your Facebook feed. Nope. Facebook operates on the assumption that you don’t really mean it when you SAY you want to hear from pages. They’ll only believe you if your ACTIONS confirm it. In other words, when you actually engage with that page by CONSISTENTLY liking/sharing/commenting. Otherwise, you’ll never even know that you’re missing a lot of the posts.
And it’s not enough to engage with the page occasionally, when you happen to see the post because others have engaged with it. It’s got to be every single week. Possibly more than once a week. Otherwise, Facebook assumes you’re not really interested, and they’ll slow down and eventually stop showing you the posts, and you’ll be busy and not notice that you haven’t seen anything from the group in a while, and you’ve missed out on the information that you expected to get.
It’s annoying on a personal level, because presumably you really did want to see that information, or at least to be able to make the decision for yourself about which posts you want to read and which you’ll skip or skim. And it’s not like Facebook will tell you that they’re withholding posts from your feed, and the page owner has no way of knowing who gets the posts and who doesn’t, so they can’t give you a heads up about what you’re missing.
A general lack of engagement has negative ripple effects for both the organization and its followers. You may think it’s not so bad if you miss some posts, since you can always go find the organization’s page when you want some information, and catch up on recent posts. But if everyone does that, the page is going to end up dead. Lack of routine engagement sort of works as a black mark against the organization’s page, and it’s not just you who won’t get the posts; no one will. As engagement drops, it becomes a death spiral, with Facebook showing the posts to fewer and fewer people, until finally the organization has to give Facebook money (that could otherwise be spent on things with direct benefits to the patient community) so it will send a post to the whole community, regardless of their engagement history, in the hope of getting some engagement to increase the number of people who see subsequent posts. Until the death spiral happens all over again.
That’s the bad news, that the algorithm requires your engagement to keep the social media flowing. The good news is that it only takes the tiniest of actions on your part to help yourself, the organization, and everyone in the community. If you want to keep getting the information from the organization you follow on Facebook, or to see the Tweets (especially if you use the Top Posts setting, although I highly recommend the “most recent” setting), commit this month to making it a habit to just automatically hit “like” on any post that’s even marginally of interest to you. Share it if you have another few seconds of available time, and comment if you have a few more seconds than that to spare.
It really makes a difference. The likes will keep you getting future posts in your feed and comments will encourage others to join the conversation, so they too will keep getting future posts. And sharing, which seems like such a tiny action, can have all sorts of advocacy benefits. If you have other friends (maybe extended family members) with chronic hypophosphatemia, they may not be as connected to the community as you are, and they could benefit from seeing the shared post showing up in their feed, because they’re following you, even if they aren’t directly following the patient group’s page.
I’d like to think too that the “small world” effect could kick in, that maybe a friend who doesn’t have hypophosphatemia and who knows you in a different context might see your sharing of a patient group’s post, and realize that another friend, someone you don’t know, has hyophophosphatemia or has a family with it, who could benefit from the information. That’s exactly the sort of thing that social media, in an ideal world, should do — connect us in unexpectedly wonderful ways.
You can start small — just hit like automatically every time the patient group’s page has a post in your feed. Once you’ve established that habit, you can expand to sharing and retweeting and commenting. Work those algorithms!
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Please note that the author is a well-read patient, not a doctor, and is not offering medical or legal advice.
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