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Closed Facebook Groups for Patients - Advice Please

Posted by Lisa Wylde @Lisa_Wylde, Apr 13, 2016

Is anyone willing to talk to me about closed Facebook groups, how you manage them at your hospital and what the patient response has been?

I’m working with a mental health facility who would like to explore closed Facebook groups for returning soldiers who suffer from PTSD and are undergoing treatment through a day treatment program. The participants of each group are carefully selected to be similar in military rank and experience and end up forming close bonds during their time together at the hospital. The hospital would like to be able to foster these relationships through moderated closed groups.

I’d like to talk to people who have experience with similar groups, even if it’s not in the mental health space. Please contact me through the site or via Twitter and I’m happy to set up a Skype call to talk further. Or if you are going to be at the member meeting next month, let me know and we can meet up there. Thanks!

This sounds like a really interesting case @Lisa_Ramshaw. There’s a related discussion taking place right now about the use of closed Facebook groups that I think is really enlightening: https://socialmedia.mayoclinic.org/discussion/sharing-patient-death-info-in-facebook-groups/

You’ll notice there that @susanwoolner has some opinions about closed FB groups. She is on a panel at our Member Meeting, so you two can connect there. I’ll also tag @ksaustin. I believe Kris has worked with some mental health groups.

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Thanks Dan. Yes, Lisa, we need to talk. My greatest concern with using FB–as convenient as it is–is that they can and do change the parameters with no notice. So your private/closed group could be an open one tomorrow. That’s not good for MH patients at all.

Let’s talk.

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Thanks Dan for the shoutout. @Lisa_Ramshaw I agree with @ksaustin who is very wise and has a lot of experience in this area as well. FB is enticing because it is a known commodity and maybe that is the argument on why it shouldn’t be used for support for significant medical issues. Significantly more oversight and security needs to be administered for the protection of individual group members. For that reason, we honestly use Yammer for closed patient and caregiving groups. It is HIPAA compliant and has a chat feature (video and text) and allows sharing of files. It allows for the setting of a repository that documents all posts to the group. It also sends a once a day synopsis to group members who have not logged in that day so they stay up to date on the group.

We used to use this as our enterprise chatting software for one year (Groupwise to Yammer to now Cisco Jabber). During the time we were standardized on Yammer I started 3 digital support groups one for epilepsy (patient based) and their provider had to enroll them, one for ALS caregivers (direct caregiver of a patient in our ALS clinic) and one for young onset Parkinson’s patients who may still be working. Each of these groups has different goals but the minimum goal is to form a supportive peer to peer relationship with other group members. I believe this is similar to your situation.

Yammer is Microsoft owned and is often bundled with MS enterprise software so it is generally available in enterprise systems. It met our IT criteria for use on our computers, It is HIPAA compliant and I could set up and monitor groups easily. Two of the groups (ALS Caregivers and YOP) are also anchored by social workers and peer mentors who have direct experience that is pertinent to the group goal and they have been through special peer mentor training through us. They are really my eyes and ears in the communities.

If you want to know more about Yammer here is a link to the Lynda.com overview video that gives you a pretty good overview https://www.lynda.com/Yammer-tutorials/Yammer-Essential-Training/169110-2.html I hope this helps. If you have more questions, shoot me an email.

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Hello – This article might be of interest, although the group was set up outside the healthcare space.

http://www.niemanlab.org/2016/04/npr-built-a-private-personal-finance-facebook-group-that-now-has-more-than-10000-members/

One huge downside with setting up a closed group that involves employees and patients (or clients of any sort) is that an employee must use their *personal* Facebook account to administer the group. Do you really want patients/clients looking you up on Facebook? Sending you friend requests? Sending you private messages? After one bad experience, I am no longer willing to do that for my organization. The group was a closed Facebook group for moms of young patients; our organization had connected the 3 moms who were admins. One of the moms invited me to join, and I accepted as a courtesy. I did not post to the group unless someone tagged me with a question or unless our Foundation was hosting an educational seminar that would be of interest to parents. However, when one of the admins disagreed with my response to a question, things blew up. Part of the problem is that she had not wanted me to join and had been carrying that resentment for years! I realized that if the situation escalated further, my organization would have no record of the communications that took place. At that point, I took screenshots of our last communications and exited from the group (and all the others I was participating in).

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We’ve created now three different private Facebook groups for specific groups of patients who are all members of real, in-person support groups, but who sought a digital space to talk in, too: Bariatric patients, brain injury patients, and one group for behavioral health: our Women’s Emotional Wellness Center group. As our social media moderator, I serve as an administrator on all of these groups, but at least two people from each of the programs has signed a moderator agreement that they will deal with the day-to-day posting and management of non-crisis issues that may arise. Should any crisis or serious complaints arise, however, I am there to step in as a System representative. I’ve found them to be one of our most successful social media tactics, and one of our most engaged audiences.

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@megancall

We’ve created now three different private Facebook groups for specific groups of patients who are all members of real, in-person support groups, but who sought a digital space to talk in, too: Bariatric patients, brain injury patients, and one group for behavioral health: our Women’s Emotional Wellness Center group. As our social media moderator, I serve as an administrator on all of these groups, but at least two people from each of the programs has signed a moderator agreement that they will deal with the day-to-day posting and management of non-crisis issues that may arise. Should any crisis or serious complaints arise, however, I am there to step in as a System representative. I’ve found them to be one of our most successful social media tactics, and one of our most engaged audiences.

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Megan is your twitter name correct in your profile on the Mayo Clinic Social Media Network? It is listed as @megancall or is this you @megankcall? Do you work at @mainlinehealth?

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Thanks everyone who has commented on this thread that I started. @susanwoolner, I have used Yammer in the past but the downside was that everyone had to have the same email address domain. Has that requirement changed? @ksaustin and I had a Skype chat about this issue and I understand the concerns about Facebook constantly changing the goal posts. Due to the fact that these patients are potentially senior military I need to be very careful around security issues. Am exploring a few options including building our own platform but am still open to others if anyone else has experience or wants to weigh in. Thanks!

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