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David Baxter PhD

Late Founder
Web sites help patients cope, connect
By JoNel Aleccia, MSNBC
Mon., Feb. 11, 2008

Personal patient Web sites transform the experience of illness, users say

In the hours after Brad Coulter?s minivan plunged off the collapsing I-35 bridge in Minnesota last summer, family members scrambled to spread the word. Phone calls were impossible; individual e-mails were overwhelming.

They turned instead to, a nonprofit patient Web site service recommended by local hospitals. Details were sketchy, but this much was clear: Brad and his family, including his wife, Paula, and teenage daughters, Brandi and Brianna, had been on the bridge as it fell into the Mississippi River.

Everyone was hurt, but Paula was critical.

?Updates will follow,? that first CaringBridge posting said. ?Prayers are appreciated.?

In the six months since then, more than 425,000 visits ? and many, many prayers ? have been logged on the site that tracks the recovery of the Coulter family, particularly Paula, 43.

It?s a high-profile example of a growing trend in what one organizer calls ?compassionate technology?: individual health-care Web sites that allow patients to share the progress of serious injury or illness.

Through daily online journals and photos, people confronted with health emergencies can keep friends and family updated instantly.

?It?s pretty much been our communication,? said Brad Coulter, 44, a database manager who suffered five broken vertebrae in the accident.

The Coulters have been able to post crucial details about their struggles. In return, well-wishers have been able to sign up for e-mail alerts and offer messages of support and caring without intruding on the family?s healing.

?Connecting the human spirit?
?I really think of it as connecting the human spirit,? said Sona Mehring, 46, who started the Minnesota-based CaringBridge in 1997 after helping friends cope with the birth of a premature baby.

Between CaringBridge and CarePages, the industry?s other large patient Web service, nearly 200,000 sites have been created in the past decade. Hundreds more have gone up on private systems sponsored by hospitals.

?So many people wanted to keep in contact with family and friends without having to constantly answer the phone,? said Angie Atema, who runs the ?Go Fetch? service offered by the Monroe Carell Jr. Children?s Hospital at Vanderbilt in Nashville, Tenn.

Practicality inspired the first services, said Dr. Sharon Langshur, co-founder of CarePages, based in Chicago. She and her husband started the business after their son, Matt, was born with heart problems in 1998. The new parents found the experience isolating and overwhelming.

?Outside the hospital intensive care unit, there was one pay phone for 40 families,? recalled Langshur, 44. ?Not that anyone wanted to make all those calls.?

Within days of Matt?s birth, Langshur?s brother had posted a Web page.

?It became this viral community,? recalls Langshur. ?By the time of Matt?s last surgery we were using it to communicate with thousands of people worldwide.?

CarePages now boasts 3 million members around the globe; CaringBridge users have logged half a billion Web site visits and 13 million messages.

It?s easy to see why. Creating a private Web page takes less than five minutes. Patients can quickly post details of their situations and invite others to join in. Within days ? or hours, in some cases ? the reach of the Web takes over.

Between the time Samantha Crowell was admitted to a Seattle hospital for cancer treatment in April 2006, and the time she got to her bed, hundreds of people already had posted to the teenager's CaringBridge site.

?That whole night and the first day, we were in the thousands,? recalled Lisa Sibert, 42, Sammi's mom. ?I check on them daily. To me, it?s been one of the most important pieces of the journey.?

Healing power of connection
When Katie Pagano?s parents posted details of their toddler?s cancer diagnosis on CaringBridge two years ago, 10,000 hits were logged in the first week.

?It helped both myself and my wife to know people cared and would write,? recalled Matt Pagano, 40, a chiropractor in Torrington, Conn. ?There were people we had never met who wrote to say ?I?m saying prayers for you.??
That connection is important to anyone struggling with serious, long-term illness, experts say. Isolation and depression are common as time in the hospital takes its toll.

?Social support is very important. It?s been shown in hundreds and hundreds of studies it?s an important component of care,? said Michael Feuerstein, a psychology professor at the Uniformed Services University of the Health Sciences in Bethesda, Md., and author of the 2006 book ?The Guide to Cancer Survivorship.?

?It can influence your immune system to speed up healing,? he added.

The Web sites become daily diaries for many users, places to post updates from the latest diagnoses and medical procedures to what kind of Popsicle the sick person prefers for lunch. Caregivers, too, are able to log their struggles with the situation, including frustration with an increasingly impersonal medical system.

?People know if it?s a particularly rough day and you?re bummed out, or if it?s a particularly good day and you need to celebrate,? said Melissa Knoll, 36, of Ham Lake, Minn., whose husband, Greg, also 36, was diagnosed two years ago with a rare and aggressive form of cancer.

The leading sites have taken different paths to providing services. CaringBridge is a nonprofit business with a $2 million annual budget that last year relied on $1.6 million in donations, according to federal records. Mehring said it?s company philosophy to rely on users who appreciate the service to support it.

CarePages is a privately held business whose parent company, TLContact Inc., was acquired last year by Revolution Health. The site licenses 700 hospitals nationwide and accepts screened advertisements to support its work, Langshur said.

In October, the Langshurs, along with Mary Beth Sammons, published a book gleaned from patients? experiences: We Carry Each Other: Getting Through Life?s Toughest Times.

There?s no question the patient Web sites have caught on. CaringBridge staff estimate that a new site is created every 10 minutes.

The Web sites are most active in the early weeks of an illness, but they remain useful after the health crisis has passed. Katie Pagano?s parents post about once a month, but since she entered remission, it?s mostly the life of a normal preschooler.

?We truly believe we?re done with this and this is nothing but a speed bump on Katie?s road of life,? said Matt Pagano. ?I know my little kid is not sick anymore.?

Lasting testament
When the outcome is not good, the Web pages can become an important memorial for those who remain ? and a testament to the patient?s legacy.

That was true for Miles Levin, the Detroit teenager who gained national fame last year after he blogged about his experience with a rare pediatric muscle cancer. The 18-year-old chronicled his feelings and philosophies on a CarePages site that attracted some 25,000 followers.

?It meant absolutely everything,? recalled his mother, Nancy Levin, who has begun her own site. ?Miles always said, ?I?m not scared of dying; I?m scared of dying without an impact.??

Months after Miles? death in August, visitors continued to take comfort from his words. By the end of the young man?s life, his CarePages site had become a vehicle of mutual support.

?Miles found deep and profound satisfaction in knowing he had helped others,? Nancy Levin said. ?It was his way of giving back.?
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