Web site keeps patients' relatives, friends updated

Local Internet developer started site to help people stay informed

By Rasha Madkour
AMERICAN-STATESMAN STAFF
Tuesday, November 4, 2003

When her son got sick, Holly Gianotti e-mailed her family and friends and asked whether they had heard of a disease with these symptoms: a swollen and tender lymph node under the armpit, small spots on the neck and back, and a high fever.

After 4-year-old Thomas was diagnosed with lymphoma, Gianotti, 32, who lives in Buda, continued keeping her loved ones updated by e-mail. Now, she has started posting updates on a Web site dedicated to helping people keep family and friends informed about a patient's medical condition.

The Family Patient Web site, based in Austin and launched in September, was started by Larry Hoffman, an independent Internet developer. He has worked with local medical organizations.

"Through working with these hospitals and doing these medical Web sites, he was exposed to patients" and what they go through, said Rebecca Bowles, director of marketing and development with Cardiothoracic and Vascular Surgeons, one group that has worked with him.

Hoffman said relatives and friends can spend hours making phone calls and sending e-mails.

"The Family Patient Web site was created to allow families to post updated information about the condition of their loved ones in one convenient, easy-to-use and secure location: on the Internet," he said.

Gianotti said sending out e-mails was therapeutic and convenient because she didn't need to repeat information for every caller. Now, loved ones can visit the Web site journal, adorned with photographs of Thomas, for updates.

Users have the option of posting publicly or keeping information private by giving family and friends a login. The service is free, though the site, www.FamilyPatient.com, does solicit donations.

Hoffman is applying for federal grants and donations to finance marketing efforts and new equipment and to pay his and other employees' salaries in the future. He is currently the only employee and works on the Web site in his free time.

Family Patient is not the only destination in cyberspace that offers such services: Some hospitals, though none in Austin, provide Web space for their patients, and CaringBridge.com and VisitingOurs.com are other Web sites.

Hoffman says he intends to offer his own version of personalized service. If patrons do not have access to a computer while they are in the hospital, or do not have time to update, he plans to go to Austin hospitals with a laptop and help them post reports. Hoffman has been advertising the Web site by providing brochures to foundations such as the American Cancer Society.

Patient privacy laws prohibit hospitals from giving out information without the patient's consent, so Web sites such as Family Patient's allow family and friends to keep updated about a patient's condition.

St. David's Healthcare Partnership is considering including a link on its Web site to a patient Web site, said Richard Brown, St. David's eHealth manager.

"If the patient is releasing it themselves, that's the patient's choice to release that information," he said. "We're not releasing the information; we're just linking to the resource."

Gianotti said she makes sure to count her blessings. Taking care of Thomas while also caring for his twin siblings, 3-year-old Sarah and Michael, and preparing for a fourth child due in December, is quite a load for Gianotti and her husband, Paolo. The couple said they are thankful for the prayers, meals, housecleaning, nursery-planning help, baby-sitting offers and donations they have received.

"Being able to keep my friends updated about what's going on helps them know how to help our family during this difficult time," Gianotti said.