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Meetings with lawmakers will show how hospitals of future will reach out
By Cheryl Powell
Beacon Journal medical writer
Published on Wednesday, Jun 17, 2009
A Canal Fulton teen is flying to Washington, D.C., today to meet and ''tweet'' with political leaders on behalf of Akron Children's Hospital.
Josh Bigham, 17, has relied on the pediatric hospital since birth, when he was diagnosed with a rare disorder known as PKU, or phenylketonuria.
Now he and his mother, Marsha, are giving back by serving as informal lobbyists for a day during meetings with federal lawmakers organized by Akron Children's and the National Association of Children's Hospitals.
While there, the texting teen and his mom will share their thoughts by posting updates, or ''tweets,'' on the Twitter Web site via his cell phone.
People can follow their journey at http://twitter.com/0609DC.
Bigham said he wants to tell legislators and the world ''just how Akron Children's helped me.''
Bigham's Twitter debut is part of a bigger push by Akron Children's to reach out to its patients and attract new customers through online social media tools.
Akron Children's is one of at least 297 hospitals across the country using Twitter, Facebook, YouTube or online blogs, according to Ed Bennett, director of Web strategy at the University of Maryland Medical System.
Bennett has a blog called Found in Cache that tracks hospital use of social media.
Hospitals increasingly are using the popular, free Web sites for cost-effective marketing, education, crisis management, media relations and customer service initiatives, he said.
''Being in a social media space is something that's simply going to be expected,'' Bennett said. ''It's going to be like having a telephone or having a Web site.''
In addition to sending out tweets through Twitter, Akron Children's
has a Facebook account and YouTube channel, as well as podcasts on iTunes.
Social media sites provide ''wonderful opportunities to directly reach our families and supporters,'' said Andrea Joliet, assistant director of interactive marketing and public relations for Children's Hospital.
''You have to be there, particularly considering our target audience. We're talking about families and kids. Where are they? They're on Facebook. They're on YouTube. They're on Twitter. They're on MySpace. It really makes a lot of sense to use the social media tools that are out there that are free.''
Akron's other hospitals still are evaluating how to proceed in the online social media world.
Cleveland Clinic on sites
The Cleveland Clinic recently established its official presence on Facebook, Twitter, LinkedIn and YouTube.
''It allows us to reach patients across Ohio, but it also allows access across the country and around the world,'' said Paul Matsen, the Cleveland Clinic's chief marketing officer. ''It gets people engaged in a way that they can't on a normal Web site.''
Aultman Hospital in Canton also recently launched a page on Facebook for job recruitment.
The hospital has formed a committee to explore other ways to use social media channels.
''We're still learning what it could do,'' said Sue Olivera, Aultman's vice president of human resources. ''I really think social media is going to be a way to locate potential candidates of all different types.''
Children's Hospital's latest venture into social media this week will allow Bigham to instantly share his experiences during the annual family Advocacy Day in Washington.
The National Association of Children's Hospitals is coordinating the two-day event, which includes sightseeing and parties, as well as training to prepare the families for their meetings with lawmakers.
Linda Emore, director of government relations for Children's, is accompanying the Bighams. On Thursday, they will meet with at least eight representatives from Northeast Ohio and both U.S. senators from Ohio.
Emore and the Bighams plan to ask lawmakers to remember pediatric hospitals during national medical reform talks.
''They have a greater impact on legislators than I ever would,'' Emore said of the family. ''They're living it.''
Bigham said he's giving each lawmaker he meets a pack of chewing gum — something patients with PKU can't have unless they're on new medications.
The rare disorder, occurring about once in every 15,000 to 25,000 births, causes an inability to break down proteins. As a result, an amino acid called phenylalanine builds up in the child's system, causing severe brain damage unless a strict protein-free diet is followed.
Children's changed life
Bigham's mother said Children's helped the family learn how to manage his condition and then enrolled him last year in a clinical trial for a new drug that has changed his life.
Bigham now enjoys steak, chicken wings and rocky road ice cream — all things he never ate before starting the new drug.
He's also able to think more clearly and focus better, thanks to the medicine, he said.
''We really need great hospitals like Akron Children's,'' said his mother. ''If it weren't for them, we never would have known about PKU. The big thing is making sure they don't forget about children's hospitals in health-care reform.''
This kind of patient-led, social media campaign can be very effective, Bennett said.
''All it takes is for one interesting update to be posted,'' he said. ''Those type of things can be picked up and amplified very quickly.''
Cheryl Powell can be reached at 330-996-3902 or chpowell@thebeaconjournal.com.
A Canal Fulton teen is flying to Washington, D.C., today to meet and ''tweet'' with political leaders on behalf of Akron Children's Hospital.
Get the full article here.
Comments
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Akron, OH
Posted 08:28 AM, 06/17/2009
This is the kind of stuff we need.
Thank you, young people.
Posted 02:07 PM, 06/17/2009
Good luck to them, I hope the convince the lawmakers to remember the children's hospitals in health care reform.
But honestly, I could do without the constant talk of Facebook, MySpace and twitter. I don't think these things will have the staying power of the internet and web sites. But then I'm not always adopting the latest gizmos and technologies, so maybe I'm wrong. But I don't know anybody (or very few people) that use these social networking things. Yet the public is led to believe they are as common as cell phones and email. You gotta have it, gotta do it.
