Connecting Patients and Families Virtually: The CaringBridge Story
Wednesday, September 26, 2012
Posted by: Emily Mullin
Sona Mehring, founder of CaringBridge, isn’t a patient advocate in the traditional sense. She doesn’t have a medical background, and she started up her nonprofit organization by chance when, in 1997, a close friend suffered a life-threatening pregnancy.
To keep family and friends informed about the critical situation, Mehring created a website. The site allowed family members to communicate information to a wide circle of people without disturbing the mother’s need for rest or placing additional demands on hospital staff. Mehring describes the site she made as a powerful experience.
"Anyone going through a health journey should have an avenue like this available to them,” Mehring says.
Mehring is the luncheon keynote speaker at the Professional Patient Advocate Institute’s upcoming 2012 Patient Advocate Conference, taking place on Dec. 7 in Orlando, Fla. Her session is titled "It's About Caring for Each Other: The CaringBridge Story."
The organization offers free personalized websites to patients facing a serious medical condition or hospitalization, undergoing medical treatment or recovering from a significant accident, illness, injury or procedure. Its patient pages function like a blog, allowing family members and friends to receive consistent information via a single website. The websites also cut down on the need to place and receive numerous telephone calls to patients and their families.
Websites can be customized according to privacy preferences, and visitors that are provided the personal website address and password, if required, can read updates on the patient's condition and post their own messages of support and encouragement to the family.
Fifteen years after it launched, CaringBridge now boasts 45 million unique visitors and 323,000 personal sites. More than 500,000 people connect through CaringBridge every day.
"Bringing together that community of support is one of the most important things that we can do as patient advocates,” Mehring says.
About 70 to 75 percent of sites are now created by so-called patient advocates, including family members and friends, according to Mehring.
In the past 15 years, Mehring says the growth of the Internet and social networking has continued to create awareness for CaringBridge.
"Social networking has exploded, so that’s been a very positive advance,” Mehring says.
In addition, Mehring says the field of patient advocacy has matured over the years in part because more information has become available to advocates through the Internet.
Plus, social medial and mobile devices mean that people are more connected than ever before. This greater connectivity has helped propel the fast growth of CaringBridge.
Mehring says the role of the patient advocate is important from both from a personal perspective and from a larger, systemwide viewpoint.
"It’s a vital role to be able to make informed, efficient and correct decisions,” Mehring says.
Mehrings says patients have a better overall care experience when they are involved in their own healthcare decisions and engaged with their healthcare team. But, she says that every patient should have an advocate to speak on their behalf.
In that sense, CaringBridge can be a part of every health journey, and Mehring says professional advocates should recommend patients and their families to use the service if they are undergoing a serious medical hardship.
CaringBridge services are available online to anyone at no cost. There is no advertising on CaringBridge sites and planners.
CaringBridge has also recently added a support planner service – http://supportplanner.caringbridge.org – that acts as a calendar and scheduling tool to help patients and their families juggle doctors appoints, visits from friends and relatives, and other occurrences related to their treatment.