Facebook Organ Transplant Group

facebook organ transplant

Working in news media relations for Mayo Clinic, I’ve gotten to know Bob Aronson fairly well over the last seven years. He’s been a consultant for us, helping us work with physicians and scientists to make their points more effectively in news media interviews.

With decades of experience in journalism, politics and consulting, Bob says the process for news media communication is the reverse of a presentation at a scientific meeting. Whereas medical researchers are accustomed to laying a foundation and then logically progressing to a conclusion, in a media interview it’s important to get to the point first, and then provide the supporting data.

Besides Mayo Clinic, another of Bob’s clients has been LifeSource, the organ procurement organization for the Upper Midwest. He also worked with the national organization, UNOS. Bob worked through the news media for years to help tell the transplant story and t0 encourage organ donation. His interest in the topic wasn’t that of a detached consultant, though. Because he had been diagnosed with cardiomyopathy, he knew there was a possibility that he might one day need a transplant.

Over the last few years, Bob grew steadily weaker. He moved to Florida last year and became a patient at Mayo Clinic in Jacksonville, where he received a heart transplant on Aug. 22, 2007.

I’ve been exploring blogging and social media for a little over a year. A colleague and I had discussed Facebook‘s ability to connect people, and we thought a support and advocacy group for transplant patients and their family and friends would be a natural. Mayo Clinic has a reunion in Rochester every summer for transplant patients and their supporters. Wouldn’t it be great if this reunion could be more than just one day a year? And if it included patients from many different transplant centers, as well as their friends and family members, that could provide mutual support and encouragement and also increase awareness of the need for organ donors.

Given Bob’s passion for the subject and his “old media” background, I suspected he might like the chance to learn how some of these “new media” could support the organ transplant cause. So for the last month or so, Bob has been learning about blogging (using wordpress.com) and Facebook. After years of learning from Bob about news media, I was glad to have a chance to help Bob with his social media education.

And in addition to his daily treadmill physical rehab, I think this has been good therapy for Bob. Go here to check out his aptly-named blog:

Bob’s NewHeart

And here’s the link to the Facebook group Bob created:

Organ Transplant Patients, Friends and You

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I hope you’ll join this Facebook group and invite your friends to do likewise, especially if you know someone who has been affected by transplant. Getting people to share their transplant-related stories will hopefully help create more awareness of the need for organs and the difference donation can make.

Bob has said he wants to dedicate the rest of his life to promoting organ donation. Social media will play an important role in his efforts.

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10 Ways Facebook Groups Beat Blogs for Sports Booster Clubs

Last year I was asked to be part of a booster club for my hometown high school’s boys basketball team. Having just started blogging a few months earlier, I thought it would be a neat idea to develop a team blog. With buy-in from the club’s leadership, I created the Packer Fast Break Club blog on wordpress.com and did a training session so the parents who would be able to attend the games could take over as administrators. (I had a daughter on the Packer girls’ team, so I set up the Austin Girls Basketball Blog, too.)

For the boys’ blog, the parent group took charge and added some photos, while on the girls’ blog I embedded a few videos from YouTube and Blip.tv. Like this one from last Friday night’s Austin win over New Prague:

[youtube=http://youtube.com/watch?v=ESTnj_sPnK4]

Since last year, though, I’ve joined Facebook. I think a Facebook group can be a much better way to build this kind of community around a high school or youth sports team.

Why?

The only real advantage for a blog for a high school sports booster club site is that it can be open to anyone on the internet. You don’t have to be a Facebook member to see it. Disadvantages of a blog are that visitors can only comment on posts done by the blog authors, editors or administrators. They can’t start a new topic or upload photos or videos unless they go through the process of signing up for a wordpress.com account (or whatever hosting service you’re using) and get authorized.

A blog is much better for one person or a small group to start or lead a discussion in which others just comment. But for building community in a sports booster club, a Facebook group has several advantages.

  1. Joining is easy. Facebook has 57 million active users, with an average of 250,000 new users joining each day. Once you join Facebook, adding another group takes just a few seconds. And if it’s an open group, you don’t need permission to join or to invite others. You can join and start participating right away. Immediate gratification.
  2. Anyone can contribute on an equal basis. Instead of just the blog authors being able to start new discussions, or upload videos or photos, you can adjust Facebook group settings so any group member can do these things.
  3. Uploading videos and photos is easier for everyone. To embed the video above on this blog I had to upload to YouTube and then put in a special embedding code in this blog post. In the Austin Packers Girls Basketball Facebook group, it was a matter of simply selecting the file and uploading. The rest was automatic. The same is true for photos. This means Facebook groups will have many more videos and photos than a blog would have.
  4. You can tag photos and videos that include your Facebook friends. This automatically alerts those friends (through their mini-feed), so they can check back on the group page. On a blog, by contrast, the users either need to have an RSS reader and subscribe to the feed (two steps that increase the complexity of notification and therefore drastically reduce the number who will get automatic notices) or you need to send them an email to tell them to check it out. That’s more work.
  5. It’s easy to post links to web stories. For the Austin Packers Girls Basketball group, I posted links to the web version of game recaps from both of the local newspapers.
  6. Players, parents, coaches and other fans can all be members. Many if not most high school students are already in Facebook. Their parents’ age group (45-54) is Facebook’s fastest-growing demographic.
  7. No anonymous comments. Anyone who adds comments on a Facebook group wall or discussion board has his or her name attached. This helps to ensure that comments will be positive and constructive if people have to stand behind them.
  8. It can build camaraderie among parents that is similar to what develops among team members. Even attending games together, you don’t always get to know all the other parents. Facebook can help strengthen personal connections among people with a common interest.

So what about concerns that by parents joining Facebook it will lose its appeal for high school and college students? Here are two reasons why it won’t.

  1. Facebook is going to be just another way everyone communicates. See #1 and #6 above, and #2 below. Just because everyone is in Facebook doesn’t mean everyone has access to everyone else’s private information.
  2. You don’t have to be “friends” to be part of the same group. I’m blessed that my kids are all my Facebook friends, too, but I understand that for some families the kids might want a more private place (and perhaps parents wouldn’t want their kids to see what their fellow flower children from the 60s are writing on their wall.) Facebook groups can be a common meeting place for people with a common interest to interact, without becoming Facebook friends.

I just started the Austin Packers Girls Basketball group yesterday, and I think it will be really helpful. And as always, it’s good to think about how the pattern of this sports booster Facebook group could be applied for other community groups in which you belong. I wrote previously about how Facebook groups could be a replacement for printed church directories.

I would be interested to hear of groups you may form for a similar purpose. What other ideas do you have?

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Facebook: Importing Blog Posts

I recently got a good question from Aruni Gunasegaram, asking how to import posts from her blog into her Facebook profile.

I look forward to learning more about facebook from your blog. I really need a crash course. The problem for me and the social networking sites is that there is so much information out there that trying to learn it all while at the same time launching a high-tech business is not proving to be very effective. I guess I’ll just learn as I use it! Some things about facebook are intuitive and others are not. For instance, how do I add my RSS feed for this blog to my profile? I’ve seen a few other people who have done it, but I haven’t been able to figure out how to do it myself yet!

It’s pretty simple, and I actually do it in two ways. The first is through the WordPress application for Facebook (since my blog is on WordPress.com), but here is the more generally applicable method that will work for you, no matter what blogging platform you’re using.

Here’s the full explanation for how you do it; the shortcut version is in the next paragraph. In your Facebook provile, in the left navigation, click more to see all of your applications, then click the Notes application, and in the right side click “Edit import settings” under Notes settings, and you will be able to choose an RSS feed to import into your Facebook mini-feed.

Or, if you want just the direct shortcut, click this link: http://www.facebook.com/editnotes.php?import

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This is where you enter the RSS feed from your blog so it will be automatically imported. (Or if you’d rather just automatically import my blog posts, you can use the feed URL pictured above.)

Then, in your Mini-Feed you will see something like this:

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The top half is what is imported directly by the method I describe above, while the lower half is what the WordPress application does.

This is a really helpful way to keep your Facebook profile fresh with a minimum of effort. You can focus on writing for your blog, and let Facebook’s automatic import feature post it to your profile. The beauty of Facebook is that it makes connecting with people easier. The last thing you need is to have to take time to enter the same information in multiple places, or to remember to post a new blog post to your Facebook profile. Hopefully having this tip will help you automate what you can, which will free you for the more interesting and higher-level interactions you can have in Facebook.

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Measuring Blogs and Consumer-Generated Media

Blog Measurement Social Media

The first afternoon session at the Institute for Public Relations Measurement Summit is entitled: How to Measure the Impact of Blogs and Other Consumer-Generated Media. Panelists include Shel Israel, co-author of Naked Conversations, Kami Huyse from My PR Pro and Todd Parsons, BuzzLogic. Donald McLagan from Compete, Inc. is a late addition. His firm monitors (with permission) every click online for 2 million people. Katie Paine is moderating, and she’s something of a legend. This is the first time I’m getting to hear her or meet her, and I guess we’re going to dinner at her house tonight. It’s a really big house.

Shel says blogs and social media aren’t really about measurement, but instead are about conversations. They are “push” media, and the real value of what’s happening is their two-way nature and the ability to listen.

Should there be standards for measuring social media?

Todd sees standardization as a weapon that kills progress, and that with the speed of change with new products being introduced so rapidly any standard is always somewhat behind the times. For instance, Kami said she used to count her comments on her blog, but now she often gets comments through Twitter, so it’s difficult to get your arms around these fragmented data.

Don said MySpace has lost 16 percent of attention in the last year, while Facebook has more than doubled.

How can you get ROI for social media? Don says ROI can be complex and doesn’t just come from the web (e.g. Auto sites get lots of traffic but almost no one buys a car online.) Todd says it is hard to make the value of social media explicit, so he tries to find some simpler means. He works with a job site that he describes as a mash-up between Monster and eHarmony.com. People listening to people they trusted (through social media) were 45 percent more likely to sign up for the paid service. They went from spending money on Google Adwords to spending less on “influencer relations.”

Katie asked, “Is it easier to measure ROI for social media than it is for PR and advertising?” Kami says it seems so, and Todd agrees. There is just so much data available that you can’t get with counting eyeballs in advertising and PR. You can make connections that simply aren’t possible in traditional media.

A question was asked about people with seven tabs open in Firefox, each refreshing regularly via AJAX, which gives an overstated estimate of how engaged people are. Kami says she hasn’t seen time spent on site change much with adoption of Firefox.

Shel had some interesting anecdotes of what he has found through his blog:

  • Having a big picture on a post increases time on site by 34 seconds
  • A medium-sized picture is only worth an additional 14 seconds
  • If he has two links in a row to a site he wants to feature, it’s much more likely someone will go there. Adding a third link in a row makes people tend to stay on Shel’s blog because it confuses them; they can’t decide which to click, so they don’t click any.

Shel changed his blog name from Naked Conversations to Global Neighbourhoods because people Googling the term “Naked” who were looking for something very different from social media. He also told the story of the guy who was on the Alaska Airlines flight who took a picture of the hole in the side of the plane, who had almost no traffic on his blog previously, but whose picture ended up on national TV. People who are not in the top 2 million blogs in Technorati today can suddenly be incredibly influential.

Shel says we haven’t been doing this long enough to have “best practices.” People need to get comfortable with experimentation, be responsible in what they do, avoid standardization. “We’re just at the ‘good ideas’ stage.”

He also told of how when hot movies open, what happens is that one kid goes in and sends a text message 15 minutes into the show to all of his friends, and if he says “sucks” it doesn’t matter how much the studio spent on promotion. It ripples through Facebook, MySpace and Twitter, and the movie is toast.

As Shel says, “We are in a transformational time.” And for those who are concerned about getting into blogging from a corporate perspective, he says “It’s much better to be shouted at than shouted about.”

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Sign of The Times

A colleague just pointed this out to me. She knows I’m the blogging and new media guy, so she thought (correctly) I would get a kick out of the fact that the New York Times‘ online edition has a slightly different masthead. Instead of “All the news that’s fit to print” it’s (see lower right)…

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So…is this new, or did I just miss it previously? Is it a sign of the Times, or just a sign that my eyes don’t pick up the small print as well anymore?

And I see that Tara Parker-Pope, who previously had written for the Wall Street Journal, has her blog going for the Times. I had heard she was moving, but didn’t know she was starting right away. Seems she’s been at it for about 10 days, starting here.

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