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Using social media with heart failure: We want your feedback!

The Heart-Failure.net team is exploring the possibility of expanding our reach on social media. We would like to hear about how you use social media and your experiences on social media as a person living with heart failure.

Please feel free to answer any of the following questions or leave any other relevant comments.

-What would you like to see more of on social media related to heart failure?
-Thinking about the content you see on social media related to heart failure, what type of content do you like the most? What do you like the least?
-What value has social media added to your heart failure journey?

  1. I wouldn't use social media to discuss heart failure and other major health problems - and I use an alias to post here (and on my FB account). Insurance companies and bad players can mine social media to look for people with health problems to take advantage of (or deny coverage) - and link that data to other publicly/commercially available sources and data vendors, to acquire a full profile of you and your family.


    It is *astonishing* how complete a picture companies can paint of you, your family, and your health problems, that IMO should not be anyone else's business, for either marketing or other (and nefarious) purposes. When I first saw how much can be gleaned about you and/or your family - I was horrified at how invasive it was. And you cannot expect this Congress to protect you - that simply isn't going to happen barring a disaster of staggering proportion (but by then the damage could be done).



    As a data/privacy management professional - I wouldn't put anything on social media that could possibly be used against me. While I realize that pony is out of the barn for most - but I advise taking steps wherever possible to reduce your potential exposure.


    Note that I will not permit an Alexa, or any other device of the type, in my house. I further recommend disabling it in your car, and disable Google Assistant/Siri on your phone.








    1. Thank you for sharing your perspective! -Jessica, Team Member

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