Hey everyone,
I wanted to share a challenge we have and ask for your feedback. We decided early on not to do a Facebook Group for Blue Faery. It might have been an easier route for patients and families to find us, but your health data is not safe on Facebook — even if the group is private.
I've had some other advocates argue with me, but it's true. Facebook makes money by scraping data and there is zero HIPAA-compliance with FB Groups. According to HIPAA Journal, "Facebook is not HIPAA compliant. Although social media has some mechanisms to control unauthorized access to accounts, Meta will not sign a Business Associate Agreement with Covered Entities." Read more here: hipaajournal.com/hipaa-soci...
While we wanted to create a community earlier, we waited until a HIPAA-compliant solution came along and we're grateful for our partnership with HealthUnlocked. However, people often find our community to late. Here is what we've done and are doing to increase awareness:
+Advertising on Google and social media
+Promoting with our partner Cure on the microsite they have for us
+Creating an ad for the community in our next Patient Resource Guide (Q12025)
+Producing more organic social media posts about the Community
Do you have any other ideas of how we can better promote the community to others? We appreciate your thoughts! Thank you.
💙Andrea
