Social Media Advocacy: Rules of the Road When You’re Not the Only One in the Car


Rational 360 frequently works with leading organizations to help effectively integrate social media into their traditional public affairs and advocacy campaigns, particularly in the health care space. Whether it is a well-timed tweet at a local legislator urging support for a bill, a firsthand video testimonial or personal account, or a Facebook effort to organize supporters, social media can be a great equalizer in health care advocacy.

As we help organizations and individuals tell their stories and advocate on their own behalf using social media, we caution about the potential pitfalls and offer rules of the road such as “Don’t say it on social media unless you’d want to see it on the front page of the New York Times.”

But what truisms govern social media advocacy when the story you’re sharing isn’t your own?

I was fortunate to spend some time recently with the Virginia Hemophilia Foundation at their annual meeting discussing social media advocacy. Near the end of the discussion, one of the many parents in attendance raised her hand and asked:

Do you have any special advice for when we are advocating on behalf of our children? Many of them are not “out”in terms of their hemophilia, which is something that parents should consider. 

It was a great question. What extra care should we take when we are using social media to advocate on behalf of our children, many of whom are either too young to have taken such a public position on their condition or who have actively decided to not make their condition part of their public identity? How can we still be effective advocates while also being mindful that we often share networks with our children’s friends and peers, and that something we post today might also be visible in the future to, for example, college administrators or potential employers?

While by no means exhaustive, here are some initial recommendations:

Discuss your potential advocacy with your child. If your child is old enough, have an honest conversation to make sure he or she is comfortable with the kind of advocacy outreach you are proposing and let that be the launch pad for your advocacy. Establish clear ground rules about what the child is or isn’t comfortable with you sharing and the audiences with which you plan to share it. Maybe your child is comfortable with you signing an electronic petition but not participating in a local TV story; or perhaps it’s okay with your child if you tweet at a legislator from a private Twitter account, but would prefer you not thank a legislator on Facebook for supporting a bill because you and your child share Facebook friends. Talk it over first to ensure you aren’t crossing any boundaries.

Leverage privacy settings. Twitter allows you to make your account private so that only those you approve can see your content. Facebook allows you to customize privacy settings on individual pieces of content to specifically include or exclude certain audiences. Make sure you have checked the privacy settings on your accounts so that you are aware who can see what you post, and so that you can also use those settings to more narrowly target only your intended audiences.

Become an expert outside of your own experience. Every parent advocate is an expert on how a disease or condition affects the day-to-day lives of their children, and personal experience and testimonials, particularly within the health care space, are what make for the most effective advocacy. But one health care advocate with whom Rational recently spoke suggested that becoming an expert on her disease beyond her own personal experience – for example, in the science behind the condition – allowed her to effectively advocate to a broader audience and helped her manage the nerves that came with sharing such personal information.

Don’t say it if your child wouldn’t want to see it on the front page of the school newspaper. While raising public awareness of a condition or helping a particular bill or regulation across the finish line could positively impact countless lives, remember to first take a “do no harm” approach on the home front with the life that inspired your advocacy in the first place. If you have any doubts – about sharing a certain piece of information, about whether or not someone will be able to see information you’ve shared, etc. – err on the side of not sharing it online. Something you publish on the Internet today will outlast your earthly relationship with your child, an end that you might hasten if you decide to publish private information about their health – or those embarrassing baby pictures – on social media.


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