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Years before the birth of Facebook or the existence of the word "blog," there was CaringBridge.
It began in Sona Mehring's Eagan living room in 1997, as a way to help a friend in the grip of a life-threatening pregnancy. Mehring, a software programmer, created a website that kept friends and family updated and allowed them to post words of encouragement.
Today, half a million people around the globe connect to the site each day to visit personal pages built by loved ones who are going through a health challenge.
"It's the pebble-in-the-pond effect," Mehring said. "CaringBridge has grown organically for 14 years, and will always grow mostly organically: a friend telling a friend, a family telling a family."
CaringBridge, a charity, has grown in lock step with the rise in popularity of social networking. The free site has been used by people in all 50 states, as well as 225 countries and territories. The number of new sites grew last year by 10 percent, a key marker of growth.
It takes no advertising, so donations keep the site secure and running. Last year, contributions and gifts hit $7.5 million, a 43 percent increase.
Google contributed in-kind gifts worth "$75,000 and above," according to the annual report, but fundraising is mostly grass-roots. More than 90 percent of CaringBridge's revenue comes from individuals, with the average contribution about $65.
"These sites are serving a real need," said Lee Aase, director of Mayo Clinic's year-old Center for Social Media, which was launched to study technology and health care. "A generation ago when people would come to Mayo, they'd go back to the hotel and spend hours calling people. More recently they'd have their cell phones and be getting calls. It does place a burden on families."
But being the oldest health-related social media site provides no cover from competition. Sites such as CarePages, which takes advertising for everything from mouthwash to diabetes management programs, provide a similar platform for families to share updates and get support.
PatientsLikeMe.com and the Cancer Survivors Network of the American Cancer Society can create global networks of support.
Facebook, launched in 2004, may be CaringBridge's biggest challenger, though Mehring views it as an ally, too. Six in 10 CaringBridge users also use Facebook, according to CaringBridge surveys.
To continue its growth, Mehring has turned to more "proactive outreach" to get the word out to patients and families.
In the past 18 months, the organization has updated its website and built applications so people can call up CaringBridge sites from their mobile phones and tablets.
Hospitals remain the core source of referrals, but CaringBridge also is working with employee assistance programs at companies that see CaringBridge as a way to reduce stress, absenteeism and turnover.
"A post to the CaringBridge site at 6 a.m. can let friends and relatives and brothers and sisters know that Grandma is at home and she could use a visitor," said Judy Trucano, CaringBridge affiliate outreach manager. "That gives an employee peace of mind, and keeps them off the phone and at the desk working."
For the first time, CaringBridge is working with health insurance companies, including Medica and UCare in Minnesota. CaringBridge sees the plans as an important source of referrals because nurses and caseworkers spend a lot of time talking to enrollees on the phone.
CaringBridge can be another tool in the plans' wellness program, said Jeri Peters, clinical services director at UCare.
"It can become exhausting for one or two key caretakers to keep the rest of the family informed, especially when the situation is changing," she said. "CaringBridge is a way to reduce anxiety and help family members feel included."
CaringBridge also is forging nationwide partnerships with nursing homes, social workers, faith-based groups and veterans as well as groups such as the American Cancer Society, National Marrow Donor Program and the Brain Injury Association.
Future growth opportunities may come from health care reform measures that reward doctors and hospitals for improved patient experiences, said Lars Leafblad, an owner of KeyStone Search and one of 13 volunteer board members.
"Hospitals are desperate to get data on the patient outcome and patient experience," he said. "Without taking away the trust factor that is so vital to CaringBridge, is there a business strategy that could include a 'caring map' or 'caring grid' where families can opt in? There's potential for a lot of innovation."
Mehring has become a sought-after speaker at conferences for her expertise in online philanthropy as well as social media uses in health care. She has commissioned surveys to try to measure how personal connections online can affect patient healing and the caregivers.
She still considers herself a "technologist," joking that once the company quit using her original code in June 2005, no one lets her near it anymore.
Focus on reliability
CaringBridge provides a service that is deeply personal and emotional, but at heart it is a technology company. Nearly half of the 70 employees focus on technical aspects, including keeping the site from crashing. Last year, CaringBridge boasted 99.92 percent "uptime."
There's even a plan to handle the "Oprah scenario," a day when a well-known person sets up a CaringBridge site and millions flock to it.
Once a quarter, the company invites people who've used CaringBridge to come to the company's Eagan headquarters to talk about their experience. The meetings remind the staff of the organization's mission, but also help make improvements and identify trends.
CaringBridge added an online store after people started asking for branded T-shirts and bracelets to use for fundraisers. And users can also publish books from their CaringBridge posts.
For Sheena Ellis, CaringBridge was a lifeline. In 2006, she was diagnosed with a type of cancer that usually strikes white adolescent males.
"I was a rarity, because I was 21, in my senior year in college, and I'm black and Mexican and female," she said.
She left her sorority sisters and friends at Bennett College in Greensboro, N.C., and returned home to Minneapolis for treatment.
"It gets very hard keeping everyone in the loop with your progress, and just people checking in," she said. "When you're lying in bed after chemo, the last thing you want to do is hold the phone and talk to 45 people."
Ellis, who works as an urban liaison at Columbia Academy in Columbia Heights, is cancer-free. But she still reads the guest book from time to time to remember how many people "sent their love and prayers my way."
It's those kinds of stories that Mehring believes set her company apart and bodes well for its future.
"Facebook," she said, "is for small talk. CaringBridge is where you go when you want to have a conversation."
Jackie Crosby • 612-673-7335