Patient Support Groups on Facebook

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Yesterday I gave yet another talk on “Web 2.0 and Medicine” at the 19th UP College of Medicine Grand Scientific Symposium at the Hyatt Hotel Manila. After my presentation, a doctor approached me asking if I had any experience running a patient support group on Facebook. Sadly, I had no experience to share with him. :( I did encourage him to continue and better yet report or publish his current Facebook support group for teenagers dealing with pregnancy. A Department of Health Doctor to the Barrio approached me as well, asking guidance about setting up a hypertension support group on Facebook.

So I sat down today and googled away … Here’s a short presentation on Slideshare.net from Ed Bennett, Director, Web & Communications Technology of the University of Maryland Medical System:

Patient Support Groups on Facebook
View more presentations from Ed Bennett
I got some pointers for setting up a patient support group on Facebook from this presentation.
  1. The Facebook group will be an extension of an IRL (in real life) support group, sanctioned by hospital authorities (including the legal department) and preferably requested by the patients. Only the hospital’s own patients can join the group.
  2. The leader of the IRL support group should moderate the Facebook group too. As moderator, he will approve membership to the Facebook group.
  3. The Facebook group page can either be CLOSED or SECRET. According to the Facebook Groups page: in a CLOSED group, anyone can see the group but only members can read posts. In a SECRET group on the other hand, only members can see the group what members post. Secret groups will not appear in a Facebook search.
  4. There must be a statement of Terms and Condtions. An example is given In Ed Bennett’s presentation from the UMMS Post Liver Transplant Support Group:
Welcome to the Post Liver Transplant Support Group online patient support community on Facebook. This group is restricted to current and former patients treated at the University of Maryland Medical Center. It is intended for you to share your experiences and connect with others who have a similar diagnosis.
This group is not intended for personal communication between you and your health care provider, or for seeking urgent medical attention. If you have an urgent medical need, please call your doctor or the nearest emergency room immediately.
5. There must be a Disclaimer statement too. Again from the same example by Ed Bennett:
This group has been set up as a private Facebook group accessible only to approved patients, caregivers and health care providers. Confidentiality of discussions shared in this forum is expected; however, it cannot be guaranteed. Private groups are subject to Facebook corporate policies. In addition, posts to the group are viewable by all group members. As with any online communication, be aware that anything posted has the potential to become public and only post information you are comfortable sharing with others in the patient support community.
By joining this private patient support group, you are indicating that you agree to the terms and conditions listed above.
6. The University of Maryland Medical Center also has a Comments Policy in place.  Violators may be banned from posting. Any comments that violate the policy can be edited or removed. You can read the entire document in the link I’ve provided but some essential pointers include the agreement NOT TO …
  • Post material that the Medical Center determines is threatening, harassing, illegal, obscene, defamatory, slanderous, inaccurate, or hostile towards any individual or entity.
  • Post phone numbers or email addresses of yourself or any other individual or entity in the body of your comment — you cannot assume the good intentions of everyone who reads them.
  • Post material that infringes on the rights of the Medical Center or any individual or entity, including privacy, intellectual property or publication rights.
  • Post material that promotes or advertises a commercial product or solicits business or membership or financial or other support in any business, group or organization except those which are officially sponsored by the Medical Center.
  • Post chain letters, post the same comment multiple times, or otherwise distribute “spam” via the Medical Center-sponsored blog.
  • Allow any other individual or entity to use your identification for posting or viewing comments.
  • Post comments under multiple names or using another person’s name.
I hope this post will be helpful to those thinking of setting up a patient support group on Facebook.

How deep is a Facebook friendship?

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My most popular post to date is the one where I asked “Can Patients be Facebook friends with doctors?”. I got varied comments. To summarize a few, I was asked why I was making such a fuss about it when everyone knows a Facebook friendship is not a real friendship so you can be trigger-happy with making FB friends. I was also asked if doctors can be friends with med reps – I’ll attempt to answer that in a future post. All these comments made me think about the depth of Facebook friendships – are you really my friend if you are my FB friend? Is having more FB friends better?

As of today, I have 626 FB friends and gulp, 82 friend requests. Most of my FB friends are from PGH or UP, some are my grade school/high school classmates, a few are my students (mostly sorority sisters) and a handful are from the pharma industry. I like that on FB I am reminded to greet even that grade school classmate I haven’t seen in decades, a happy birthday. I like how I am able to catch up with friends who are abroad. But how deep are these friendships exactly if we don’t meet up offline?

Blogger Linzee was also confused about FB friendships when she wrote on the Etsy blog-

Did these folks really fit my definition of “friend”? Why would they want to read my day-to-day prattle? How did I know them and why should we stay in touch?

How can we define friendship? Watch this short YouTube video by Notebook Babies entitled “What is a Friend?”

The video defines a friend thus -

  1. A friend is someone who will compliment you.
  2. A friend will cheer you up when you’re sad.
  3. A friend will let you win sometimes.
  4. A friend will remember your birthday.
  5. A friend is fun to be with.
  6. And a friend will make you smile.

I think you can do all of these on Facebook, except No. 5. How important is no. 5? Does online chatting count as “being with”?

In the same post, Linzee talks about a photographer named Tanja Hollander who has embarked on “Are You Really My Friend? The Facebook Portrait Project.” Tanja has set out to meet up with all her 626 FB friends and take their photos “in intimate settings – gathered around kitchen tables and lounging on living room sofas.” I suppose this is her way to make the friendship real! Tanya’s work will be on exhibit at the Portland Museum of Art in 2012 – that should be interesting.

Finally in this article, “Friendship, Facebook-style,” Aditya Chakrabortty recounts how on Christmas Day, a certain Simone Back posted what was essentially a suicide note on her Facebook wall – “Took all my pills be dead soon so bye bye every one.” Sadly, not one of her 1,048 FB friends checked up on her. How can that be real friendship? Very disturbing indeed. Something to think about with Christmas only a few days away.