Keeping People Informed: Free Patient Websites

How are you doing? Is there anything I can do to help? You had surgery? I talked to Jane last week and she said….

When people are sick, about to undergo surgery, or chemotherapy, one of the areas that can be the most difficult to manage is keeping people informed with accurate and timely information. Answering phone calls, letters and e-mails about “how things are going” can be overwhelming. As one person noted recently, “there was a plan in place to keep people informed while I was undergoing surgery, but when the surgeon came out to talk to my family, everything changed.”

Thanks to several families, who have had similar experiences, free websites are now available to those who want to share their story, and build a support network, without spending countless hours doing it. Because these websites require a password to enter, you control who has access to the information, and it is up to you to decide who should write and when. You can post pictures, specify what you need, thank people for their help, and reduce rumors by providing accurate information. In turn, people can leave messages of support. They can also be alerted by e-mail each time you post a message.

A number of hospitals and medical centers have agreements with organizations providing these services, so you can get some help in setting up the site, particularly important if you don’t have a computer in your home. Keep in mind that most medical facilities offer computer access to patients and their support team. Because these sites are password protected, you can go on-line and add new information from the hospital, just as easily as you can at home.

If you don’t have a computer at home, there are many places in the community that offer free internet access including public libraries, schools, churches, community centers, and community based organizations.

Below is information about two of the oldest sites offering free websites to patients:

CarePages was founded by Eric and Sharon Langshur in 2000, when their son, needed heart surgery. As a way to help keep people informed, Sharon’s brother set up the first CarePages patient website. Carepages offers the following note to those dealing with chronic conditions. CarePages is an online community of millions of people coming together to share the challenges, hopes and triumphs of anyone facing a life-changing health event. CarePages helps members and their families connect during and after hospitalization for illnesses ranging from cancer, spinal cord injury, stroke, heart disease to premature birth. It is also the place to be for patients with chronic conditions who want to journal their experience or connect with others facing similar circumstances. Some of these life-changing conditions include diabetes, Alzheimer's and fibromyalgia.

Caring Bridge In 1997, founder Sona Mehring’s close friend suffered a life-threatening pregnancy. To keep family and friends informed about the critical situation, Sona and friends 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. While the baby did not survive, her death prompted an outpouring of loving messages to the family. They immediately understood that other patients dealing with the birth of a premature baby, childhood cancer or other critical illness would benefit from the same web resources. A memorial fund created in the child’s memory was the beginning of Caring Bridge.