Discussions

FTC Complaint Says Facebook Sold Info from Closed Patient Groups (!!!)

Posted by Kimberly Dorris @KimberlyGDATF, Tue, May 14 3:05pm

Honestly, not surprised at this, but it is a devastating betrayal of trust for patients who participate in closed groups.

"In January, a complaint was filed with the Federal Trade Commission alleging the content of private Facebook health groups had been shared with third parties. Some members of these health support groups claimed they had been targeted by advertisers who had offered products and services related to health conditions that had only ever been discussed in closed, private Facebook health groups."

I will be looking into the new "Health Support Group" designation for the group I run for the GDATF, but it's going to be hard to put the trust toothpaste back in the bottle.

Article: https://www.hipaajournal.com/facebook-makes-changes-to-health-support-groups-to-better-protect-users-privacy/

Something that I just caught in the article: FB does NOT say that they will stop doing this. Instead, the new Health Support Group designation allows group members to post questions anonymously via the admin:

"In response to the complaint, Facebook has made changes that will allow users to post information anonymously in health groups. The groups will be given a special designation – Health Support Group – and will be treated differently to other Facebook Groups."

REPLY

Thanks for raising this very important issue, @KimberlyGDATF. I notice the article you reference says Facebook has been accused of this behavior, but I don't see that they have admitted it. Either way, it continues to raise serious issues about privacy and Facebook. Beyond registering your Facebook group as a Health Support Group, what other reactions are you considering? Are you troubled enough to change platforms?

Liked by Kimberly Dorris

REPLY

Hi Dan – Fair point that this is just an accusation…and has not been proven!

We were already in the process of working with an outside vendor on a site that will include a "social wall". Between this issue and the fact that moderation is so time-consuming (particularly trying to find new replies on posts where there are multiple comments), I really hope the new group takes off. (Although I don't know that we would shut down the FB group completely.)

REPLY

Also, I've found that the "Health Support Group" status appears to be only a pilot program now and isn't available to everyone. I'm not sure if it will be that useful. The advantage is that a group member will be able to ask a question anonymously – but then if group members want to respond with their own experiences, that info is NOT anonymous!

REPLY
@KimberlyGDATF

Hi Dan – Fair point that this is just an accusation…and has not been proven!

We were already in the process of working with an outside vendor on a site that will include a "social wall". Between this issue and the fact that moderation is so time-consuming (particularly trying to find new replies on posts where there are multiple comments), I really hope the new group takes off. (Although I don't know that we would shut down the FB group completely.)

Jump to this post

So you're setting up a second platform for your community – unrelated to Facebook? Do you mind sharing with us what platform you're considering adding?

Liked by Kimberly Dorris

REPLY
@KimberlyGDATF

Also, I've found that the "Health Support Group" status appears to be only a pilot program now and isn't available to everyone. I'm not sure if it will be that useful. The advantage is that a group member will be able to ask a question anonymously – but then if group members want to respond with their own experiences, that info is NOT anonymous!

Jump to this post

Like you, @KimberlyGDATF, I'm not really too crazy about this "anonymous" solution. A much simpler response would be to PROMISE that FB will NEVER share any information from a secret or closed group with advertisers or anyone else. Open groups, being just that – open – could be an exception. However, given FB's track record, those promises may be difficult to believe.

Liked by Kimberly Dorris

REPLY
@DanHinmon

So you're setting up a second platform for your community – unrelated to Facebook? Do you mind sharing with us what platform you're considering adding?

Jump to this post

Hi Dan – This is the company we are working with. One nice feature in addition to the new group is that the site will have a repository of info on Graves' disease that comes from credible sources – medical associations, peer-reviewed research, etc.! https://rarelifesolutions.com/

REPLY
@KimberlyGDATF

Hi Dan – This is the company we are working with. One nice feature in addition to the new group is that the site will have a repository of info on Graves' disease that comes from credible sources – medical associations, peer-reviewed research, etc.! https://rarelifesolutions.com/

Jump to this post

Thanks for sharing, @KimberlyGDATF. This group has a very interesting focus on rare diseases. I had the privilege of speaking at a RARE on the Road conference sponsored by Global Genes and Every Life Foundation in Birmingham AL a couple of weeks ago. Amazing group of people working hard to build awareness about their rare diseases as well as advocate for better research and protocols. It's wonderful that your new site can curate credible sources. Hope it's successful!

REPLY
Please login or register to post a reply.

© Mayo Clinic Social Media Network. All Rights Reserved.