Seven Steps to Promoting Transplant through Social Media

I’m in Pittsburgh for the 2008 Transplant Games, an event sponsored by the National Kidney Foundation “to demonstrate the success of transplantation, honor those who have given the gift of life, and call attention to the need for more organ donors.”

I am accompanying a couple of staff members from the Mayo Clinic Transplant Center in our Mayo Clinic booth. They’re the experts in transplant and medicine, and I’m helping them work with the transplant recipients, living donors and their family members who are here to promote organ and tissue donation through social media.  Here’s a description of what we’ll be doing.

More than any type of patient I know, transplant recipients seem to be especially grateful for the opportunity at a new life they have been given through transplant. Whereas some patients may want to keep the fact of their medical conditions private (which is absolutely their right), my experience with transplant patients is that they have an evangelical zeal to let people know how important organ and tissue donation is.

It seems to me that social media, whether it be networking sites like Facebook and MySpace, or through sharing videos on YouTube or photos on Flickr or via a blog, present unique opportunities for transplant advocates to spread the word. Here’s why:

I work with mainstream media as part of my job, and in some ways transplant stories suffer from what I call “The Space Program Syndrome.” NASA has been so successful with its Apollo and Space Shuttle programs that now going into outer space has become a “ho-hum” event. The only time mainstream media pay significant attention to space flight is after a Challenger or Columbia disaster, or on a local/regional basis, when someone from the community is part of the shuttle crew.

That gives a clue to how social media sites are particularly well suited to help promote transplant, as my friend Scott Meis (who works with the Donate Life Illinois program) has found.

The difference between mainstream media and social media is that mainstream media have to try to command a large audience in order to be economically viable. Reporters, editors and other gatekeepers tell a story professionally, but to pay their salaries there needs to be a certain level of widespread interest so the advertisers who support the programs or publications can reach a critical mass of individuals.

As Clay Shirky says in Here Comes Everybody (full review coming soon, but described briefly here), mainstream media are built on the scarcity model. The number of FCC licenses to use the finite broadcast spectrum is limited, and there is a significant expense involved in creating a newspaper (reporter/editor salaries, printing presses, paper, delivery, etc.)

With social media, the content is largely created by amateurs as a labor of love, and the rewards are psychic and spiritual rather than economic. Almost anyone can participate in these media and can create and distribute content for FREE, or at least at a ridiculously low cost. So they don’t have to reach a large audience to be successful.

Mostly they reach people they know, and who know them. I read somewhere that the average blog has something like a dozen or fewer readers, most of whom know the author.

That’s the other reason why social media can be so powerful in promoting transplant and organ/tissue donation. It can be moving to read a newspaper article or see a TV story about a transplant recipient being given a new chance at life; it’s immensely more intense to read or see and hear first-person accounts from people you know, telling how transplant saved or at least radically improved – their lives.

So, if you are participating in the Transplant Games, here are seven steps you can take to promote awareness of donation.

1. Stop by the Mayo Clinic Booth and have your picture taken or have your video testimonial recorded. Your photo will be uploaded to Mayo Clinic’s Flickr account, and your video will be on Mayo Clinic’s YouTube channel. One of the “tags” associated with your photo or video will be transplantgames08. More on that later.
2. Join Facebook and find or invite friends. You will be able to use Facebook to share your video or photo with your friends, and also to tell your story in writing if you want, which is Step 3. For more background, take the Introduction to Social Networking course, and Facebook 101.
3. Join the Organ Transplant Patients, Friends and You group in Facebook. You’ll be able to connect with others involved in transplant in a virtual support group. Write your transplant story on the group’s wall, or on the Mayo Clinic “fan” page, which you also can join.
4. Get a YouTube account, so you can more easily share videos (including your transplant testimonial) with your friends. Then you also can subscribe to the Mayo Clinic YouTube channel. If you take videos during the Transplant Games, give them the transplantgames08 tag, too.
5. Join Flickr so you can upload photos from your Transplant Games experience, tagging them transplantgames08.
6. Consider starting a blog. One of my friends, Bob Aronson, received a heart transplant at Mayo Clinic in Florida last August. I had gotten to know Bob through my work at Mayo Clinic. He helped us train physicians and scientists in ways to most effectively communicate technical science stories through mainstream media. So it was a delight for me to introduce Bob to “new media.” He started the Organ Transplant Patients, Friends and You Facebook group, and also launched a blog. I helped him name it, and I think it’s pretty clever (although to really get it you probably need to be over 35): Bob’s NewHeart.
7. Encourage other Participants to take Steps 1-6. As you are meeting many new people this week, invite them to get engaged with these social media tools, to tell their stories in their circles of influence.

As I mentioned earlier, all of these services are FREE. The only investment required is your time to learn to use them, and to tell your story. And with our free courses in social media basics, blogging, podcasting, Facebook and Twitter, Social Media University, Global provides the step-by-step instruction you need to use these tools effectively. So I hope you’ll enroll today.

Finally, a word about tagging. Tagging is a way for users of social media sites to label their videos, photos and blog posts. So if everyone participating in the Transplant Games uses the transplantgames08 tag, that will make it easy for people to find all of the related resources.

And hopefully after the Transplant Games are done, we will see that the power of thousands of transplant recipients and advocates communicating through social media can exceed what might be accomplished through traditional media, by telling powerful stories through these simple but powerful tools.

Author: Lee Aase

Husband of one, father of six, grandfather of 15. Chancellor Emeritus, SMUG. Emeritus staff of Mayo Clinic. Founder of HELPcare and Administrator for HELPcare Clinic. View all posts by Lee Aase