Perils of the information highway: We need better road maps

Abstract

How did we ever get through the day without turning to Google for answers to ordinary life questions or complex medical puzzles? We assume ourselves to be smart enough to weed out the irrelevant information, advertisements, and blogs and make the best choices. In this issue of Liver Transplantation, Melloul et al.1 look at the quality of living donor information available on the Internet, and they demonstrate some serious deficiencies. The authors evaluated 32 Web sites with the Ensuring Quality Information for Patients tool (a 36-item checklist), and they report that the median number of topics addressed by the Web sites was only 16, with morbidity and mortality being addressed by only 22% and 41% of the Web sites, respectively. What do you do if your loved one needs a liver transplant? He or she is finally on the list, has endured numerous tests, and has accepted the fact that indeed there is no survival without a new organ, and then the final hard truth comes: from where will this liver come? There are more than 17,000 people on the waiting list in the United States, every 11 minutes a new name is added, and 20% of the patients die on the list each year because they become too sick to receive an organ. Deceased organ donation has decreased across the nation, and the situation is particularly severe in states such as New York, in which there were 423 donors in 2009 but only 379 donors in 2010 (a decrease of 10.4%).2 Families of loved ones hear these staggering facts during the evaluation process. They are aware that longer wait times (especially for patients with blood type O or A) translate into greater illness burden, suffering, and hardship for all. Then, there is hope: living donation is offered as a life boat, as an option to earlier organ access. For many donors, the decision to donate is emotionally based and spontaneous and occurs during the early months of the recipient evaluation. Potential donors decide to help because of love and desperation and in an attempt to avoid the caregiver burden. They quickly scan the family members and dynamics and self-select the fittest member (eg, a person who is single and psychologically/physically strong with good coping skills and no children). After the initial and often impulsive decision to donate, they then turn to the Internet for answers. In the privacy of their homes, without pressure from family members, friends, or potential recipients, they search for answers, facts, risks, and benefits. It would be ideal if their first hit on the Internet were a Web site compliant with international standards for quality-of-donor information, that is, a Web site that is not institutionally based, has clear statistics for donors and recipients, and addresses complications, postdonation quality-of-life issues, normal recoveries, and risks of long-standing health issues. This Web site would not take away from the information received during the extensive donor evaluation at each institution. It would allow for better learning, repetition, and processing of information. No real learning occurs during the donor evaluation because the donor is highly anxious and is concerned only about being accepted and being told that his or her liver, health, and psychological and physical well-being are perfect. Donors appear to express understanding and are able to repeat risks and benefits superficially. However, most donors are concerned about where they should sign the consent form and when the surgery can be performed. The consent forms are never fully read but are quickly scanned, and all donors think that complications can happen, but not to them. Once a donor has been accepted by an institution, the pressure is off, and the donor can then go back to the Web site as often as he or she desires to process information before, during, and after donation. Ideally, this Web site would use both written and visual tools to convey information (eg, videos, computer animation, and interactive learning). It would include the testimonials of donors with complications and donors without complications. The site would include links to other Web sites with information on recipient illnesses and the risks of transplantation because the psychological well-being of the donor is very much connected to the recipient's outcome. The better the donor understands the risk to the recipient, the better the donor will be prepared for complications in the recipient or graft failure. I commend Melloul et al.1 for showing us the pitfalls of current Web sites, and I look forward to improved road maps. The challenge for the transplant community is determining how to collaborate and maintain and manage Web sites as learning tools.