Facebook 302: Facebook for Medical Support Groups

Sites like CarePages and CaringBridge have been developed to meet important needs for hospitalized patients and their families and friends.

But Facebook, as a powerful general-purpose social networking site, may prove to be an even more useful alternative to these dedicated patient communication sites.

I will start by describing the very real needs CarePages and similar sites meet, and then discuss how Facebook can meet those needs.

The Needs

When people go to the hospital, they typically leave many family members and friends who are starved for information.

A generation ago, one or two of those interested persons typically would receive a collect or credit-card call from a pay phone, and would be responsible to call the rest of the family and friends. Or an exhausted spouse would return to the hotel and spend all night calling with updates.

A decade ago, with the ubiquity of cell phones, the updates became easier and more frequent. The patient and spouse typically had family and friend phone numbers programmed into their cell phones, and could call right away. And of course their friends could and did call, which meant that those hospitalized would spend much of the day relaying the same information repeatedly.

This led to the development of sites like CarePages.com, where users could set up free Web sites and post news and condition updates. That way they could let everyone know what’s happening without having to repeat themselves and could post pictures. And their interested friends and family members could send greetings and express their solidarity and care.

These are really useful services, and Mayo Clinic provides CarePages access for its patients. But many patients, especially those already using Facebook, may want to consider how a Facebook group could meet those needs.

The Facebook Alternative

A Facebook group has essentially the same functionality as a CarePages or CaringBridge site, and so when my daughter, Rachel, went to the hospital Thursday to have labor induced for our first grandchild (and when the process started to stretch over days instead of hours), I decided to use Facebook to share updates.

My wife Lisa and I had spent much of day two (Friday) with Rachel and her husband Kyle at the hospital, and I could see that having an online status update would be helpful. I also had taken some Flip video during Hour 36 of the adventure that I thought would be good to share, particularly with Rachel’s four siblings 100 miles away, and with Kyle’s brothers in Indiana and on the other side of the world.

I started by just posting the video to my personal profile, but limiting access to a family and a couple of close friends. Then I remembered the Groups function, and thought that would be a better and more versatile choice.

I created a Closed group, Awaiting the Birth of Evelyn Grace, so only those I invited or approved could have access. I checked with Rachel about this, and she said we should just start by inviting immediate family until we talked about it more. I could have chosen to make the group a Secret one for even more privacy.

Creating the group took about two minutes. And because everyone in the Aase and Borg clans has a Facebook account, inviting them to join was easy.

Just for fun, I also created a CarePages site for Rachel, and made it private as well. That was a good experience, too; the site is designed well from a usability standpoint. And there is a way to invite friends by importing e-mail addresses from a variety of sources, so you don’t have to remember all of their e-mails.

Similarities and Differences

Both a Facebook group and a CarePage have privacy settings that enable you to limit access. Both let you post photos with captions. Both have a place for visitors to share best wishes and prayers. Both enable you to send condition updates to your concerned friends. Both services are supported by advertising.

CarePages, because it is specifically designed for patient use, has some pre-built forms and fields, such as Visiting and Contact Information, that give it a definite health care feel. Instead of a Wall as in Facebook, it has a Guestbook. CarePages also receives financial support from hospital sponsorships, and solicits donations from site visitors (as does CaringBridge). Finally, CarePages has some associated disease-based discussion forums and support groups you might find helpful.

Facebook allows you (and group members, if you like) to upload videos in addition to photos. This makes it possible, as I did in Rachel’s case, to share videos only with selected individuals. YouTube lets you limit access to videos by making them “Private” but the users need to have YouTube accounts and you only can designate up to 25 friends to have access. On Facebook, group members see who the other members of the group are and can interact directly with each other. You also can have multiple administrators for a group, so I could create the group but then add Rachel and Kyle as administrators later, when they’re less preoccupied. Then they could take over the group and move me to ordinary member status, so it would become “their” group.

Bottom Line

If you’re already in Facebook, and if most of your family and friends are there, the choice seems pretty obvious to me. Creating the group takes just a couple of minutes, and the friends you invited can join in seconds, without having to create an account on yet another Web site. A Facebook group lets you create and add members to a site much more quickly than one of the dedicated patient update sites.

Even if you have several friends or family members not in Facebook, it could still be a good choice because Facebook has the same facility for inviting people through your e-mail address book as CarePages does.

The ability to add video updates is a major advantage of Facebook, too.

If you and most of your loved ones haven’t gotten into social networking yet, a CarePages site may be preferable. It’s more tailored for the health care environment and the specific need at hand. Starting from scratch and getting people to join Facebook and then your group may complicate things a bit.

But with Facebook having become both the biggest and fastest-growing social networking site in the world, the Facebook option may work really well for many patients

Evelyn’s Epilogue:

At 3:18 this morning, 68 hours after the start of induction, Rachel gave birth to Evelyn. With the happy ending, Rachel and Kyle don’t mind the whole world knowing, so here’s one of the videos from the Facebook group, that I also posted to YouTube:

[youtube=http://www.youtube.com/watch?v=gcPviulWm-c]

Within a few minutes this evening I also was able to invite a broader group of family friends as well as many co-workers. So you should be seeing Evelyn’s group growing well beyond the 8 members it had yesterday

Assignment Options

Choose one of the following:

  1. Get sick or have some other kind of medical condition that requires hospitalization. Or have a family member or friend become hospitalized. Then form a group in Facebook to communicate with family and friends.
  2. As an alternative, you can request to join the Awaiting the Birth of Evelyn Grace group and see what we’ve done there.

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Author: Lee Aase

Married father of six and grandfather of seven, and the Chancellor of SMUG - Social Media University, Global. By day I'm the Director of the Mayo Clinic Social Media Network. Whatever I say here is my personal opinion, and doesn't reflect the positions of my employer.

6 thoughts on “Facebook 302: Facebook for Medical Support Groups”

  1. Hi Lee,

    Congratulations on your first grand baby. I’m glad facebook groups provided the communication you needed.

    I belive in CarePages and other specialized communities because they allow you to “Start from scratch” somewhat during a health event. Facebook is the latest and greatest, but i’m guessing most people interested in facebook also were on Friendster and MySpace too until those sites became too noisey and meaningless. Most people have hundreds on their facebook friends list but if somehing happened to a close family member, they might not want someone sending well wishes along side throwing sheep at people and the latest pictures of their healthy baby or wedding. I think there’s a sensitivity chip missing on facebook. There’s also the “meet others like me” feature that facebook can’t offer because you can’t really meet anyone new.

    That said, finding a way to work with Facebook is CarePages’ challenge right now and we are working on it!

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