If you’ve logged onto the Comprehensive Transplant Center web site lately, you’ve found a new addition, the Patient Zone, developed by patients and staff to focus on the practical aspects of waiting on the list, transplant surgery, and life after a transplant.
Under development for almost a year, the site still has some sections under construction, but a good portion is up and available as a resource to Hopkins transplant patients. The site was a project of the Transplant Patient Committee and is led by liver recipient Patricia Bandy who conceptualized the site. Patients and staff contributed and reviewed material for accuracy.
“We looked at transplant center web sites and found that there was very little patient-focused information. Patients before and after transplant have a number of questions—and they are not all medical. They need information of a practical nature and information on how to cope. That has been our focus,” Ms. Bandy said.
“Patients want information but they can’t always find what they need,” she added. “They look over the web and often find inaccurate information, rumors, and frightening material. They locate some good sites, but users have to click around to get the information they need, and often they cannot find it at all. The Patient Zone will make it easy to find accurate information.”
The site is accessible at http://www.hopkinsmedicine.org/transplant/patient/zone. By clicking on The Transplant Journey link, the patient or family finds a wealth of information. Currently available online are links to sites on pre- and post-transplant drugs and glossaries of transplant terms, so that patients can understand better what they are reading and hearing. In addition, all Bridges newsletters are on line and can be searched by department or issue, if a patient wants to refer to a past article. ”Some articles in Bridges can be too long and need editing to shorten, but on the web, editors can place the longer version, as appropriate,” said Ms. Bandy. “We are even considering offering bonus newsletter articles on the web in the future.”
FAQ, Frequently Asked Questions, are under development. Liver FAQ are up at this time and other organ group FAQ are being completed. “This section offers the patient perspective, especially the emotional component of transplant. It is not just a surgical experience for patients and the family. We point out that the emotions of all involved are a significant part of transplantation,” she said.
In addition the site offers information for living donors and an easy, on-line way to refer living donor candidates directly to the medical team. The CTC Patients Events Calendar is updated on the site.
