Commentary

A Reason To Care About Social Media

"Her surgery is tomorrow morning and she's not at all nervous! Please say a prayer for her and think of her tomorrow at 7:30 when surgery begins." -- Sept. 1, 11:15 a.m.

This was the first entry posted on the site "Heal Fast Billie" hosted on CarePages through the hospital where a preteen I know just had surgery. CarePages offers these private blogs either directly or through more than 625 North American healthcare facilities. I'd heard of it before, but it was hard to fully appreciate until I had a personal connection. For the past week, I've been glued to Billie's site, checking updates almost as frequently as I've accessed Facebook. (Note that names of friends and family are changed here to protect their privacy.)

"We just met with the doctor who seemed really really pleased with everything. They are 'closing her up' now." -- Sept. 2, 2:41 p.m.

As I write this, the community for Billie has attracted 61 visitors and 104 public comments. Her mom publishes updates several times daily. I don't get to see Billie and her parents that often, so without this I'd have probably heard the result of the surgery but little more. Now, while she lives several states away from me, I have this ongoing connection, and with all the positive news I've come to look forward to the results.

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"I'm sure there's a more tech-savvy way to do this... but I just took pictures of Billie's x-rays and posted them to the Photo Gallery. The contrast in pre/post op images is remarkable. As I said earlier, Billie was especially happy when she saw these x-rays, even in her very groggy, post op state. All really great." -- Sept. 3, 3:47 p.m.

The CarePages sites are hardly fancy, but they're extremely functional. Billie's mom quickly figured out how to run her own community, one with a small but devoted following. The photos of x-rays are remarkable, as are the pictures of Billie. Even if Billie won't put all these photos on Facebook someday, she loves sharing them with this intimate group.

"Dudes!!!! I didn't notice any virtual bagels or I wouldn't have sent them. I am feeling very bright and sunny myself just knowing all is well with you. Will try to make it in for a visit Tuesday. Remember Billie, walk before you run! Much love." -- A response to a post on Sept. 5

As with any great blog, the comments are required reading. I know several of the people who write them but don't know most others. Even though I have no clue who wrote the note about virtual bagels, it's personally reassuring seeing that this couple is a part of Billie's life.

The more I visit the site, the more it reminds me what's truly remarkable about social media. It's about people coming together to connect around something - or someone - they care about. Sharing media here, whether status updates or photos, is practically effortless. All participants can respond, giving them a greater investment in the community. The cause doesn't even have to be as lofty as the recovery of a loved one. Facilitating this kind of involvement around other passion points like recipes or travel advice can be powerful for those participating. Yet CarePages offers that crystal-clear reminder of how social media can bring people together in ways that weren't possible several years ago.

For those running communities, whether as a marketer, technology vendor, or any kind of community manager, the biggest lesson you can learn from CarePages is to make it as easy as possible for the target users to do what they're supposed to do. In this case, it's about sharing text updates, posting photos, and responding to posts. Personally, I'd love to see other features, like the ability for organizers to send updates via text messaging or custom apps, and easy ways for visitors to send virtual and physical gifts. I'm quickly getting into columnist mode, though; I don't know firsthand how much those matter to the target users of CarePages. The simplicity seems to work for Billie's mom.

CarePages is just one way to do it. It's also possible to run similar communities through Facebook, Twitter, YouTube, blogging platforms, forums and countless other means. That only reinforces how far we've come and how meaningful social media can be. The only thing more exciting for me is that we're just getting started, and there's so much more good we can do.

We can return one final time to Billie's mom, who was more eloquent than I could be. She wrote after the surgery, "I'm so busy thinking about Billie that I completely forgot thank all of you who are/were thinking about Billie today and wishing her well. Today was about as perfect as it could have been and knowing that she had so many people pulling for her, really means so much to us."

3 comments about "A Reason To Care About Social Media".
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  1. Kathy Hall, September 7, 2010 at 2:59 p.m.

    Carepages has been a lifesaver for me. My daughter was diagnosed with cancer in March 2010. She is 18. Carepages allows me the ability to communicate her status daily to over 160 people. It helps to cut down "how is she doing" calls and it keeps people updated so they remain involved and supportive. I've grown to appreciate the ability of social media to transmit messages in a timely fashion. The supportive comments are appreciated and the supporters feel they are a part of our journey.

  2. Mary Margaret Harder, September 7, 2010 at 4:11 p.m.

    CarePages was an amazing tool, unlike anything else when my husband was diagnosed. We relied on one message out to everyone who loved us. I was especially grateful that my Visitors weren't asked for money every time they sent a message to us. I was so grateful to the hospital. Every hospital should offer CarePages.

  3. Ben Munoz, September 8, 2010 at 9:55 p.m.

    Social media is changing how health care works. In the beginning, patients were able to access information via information sites like webmd, drkoop, and wikipedia.

    Now, on top of those older information sites, patients are joining communities where they can communicate with each other about symptoms, treatment, and recovery. It's really unprecedented.

    This is particularly important for rare diseases, where there is a particular scarcity of information.

    Ben
    http://www.bensfriends.org
    "We Build Patient Communities For People With Rare Diseases"

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