The good with the bad
Dr. Nangia’s site addresses many of the myths that make their way around the web and the lay media. For example, viewers will learn that a woman does not have to stand on her head after intercourse in order to get sperm to the uterus, and that laptops can raise scrotal temperature by a degree or two but this has not been proven to cause male infertility.
Elsewhere at the University of Kansas Medical Center, urology chair J. Brantley Thrasher, MD, had his own memorable run-in with bad Internet information when a patient with prostate cancer came across a website that advertised mushroom extract as an agent for prostate health. The patient told Dr. Thrasher that he planned to use this complementary treatment in lieu of conventional therapy.
After some investigation, Dr. Thrasher learned that the company hawking the mushroom extract had ties to the company that misrepresented shark cartilage as a cancer-prevention agent back in the early 1990s. “Patients have to be alerted to the fact that a lot of the information they find online regarding complementary medicine and supplements isn’t regulated in any way, so anyone can make any health claims they want, with no scientific data to support it,” Dr. Thrasher said.
“You have to spend a lot of time sort of ferreting through ‘What is real and what is Memorex.’ I tell people that they’ve got to focus on sites that provide credible information, such as the National Institutes of Health’s National Center for Complementary and Alternative Medicine “(http://nccam.nih.gov/).
But he feels confident instructing patients to read up on their conditions at recommended websites once they are back home, where they can digest a multitude of facts at their own pace, rather than receive an avalanche of information from the doctor during their appointment. Was Dr. Thrasher always so confident in sending people to the Internet? “Gosh, no,” he said. “Ten years ago, absolutely not; but in the past five years, that has changed. Seven years ago, less than 5% of our clinic patients were finding out about us on the Internet. Now, in the last five years, that has changed tremendously. We actually really started beefing up our website in the recent past because patients are doing just that.”
Dr. Thrasher’s vice-chair, Tomas L. Griebling, MD, MPH, agrees that although patients are now better informed overall about their health care, both in terms of understanding the disease process and methods for evaluation and treatment, the quality of information online can vary greatly from source to source. “Because there is no peer review or oversight for many web-based resources, some are of excellent quality but some are definitely not,” Dr. Griebling explained.
But because he believes that the more quality information a patient can access, the better, Dr. Griebling encourages his patients to seek information online from pre-approved sites.
“We certainly try to maintain a listing of reliable web-based resources on various urologic conditions that can help patients access quality information,” he said. “In general, the websites that are affiliated with established professional organizations such as the American Urological Association have excellent information, and many disease-focused groups and patient advocacy groups have excellent materials as well, such as the Interstitial Cystitis Association www.ichelp.org].”
Renal specialists must remain as vigilant as their counterparts in urology in monitoring the websites their patients read. “In certain situations, the Internet has created a more educated patient, and this makes for more meaningful and insightful discussions about each patient’s medical condition,” said Tejas Desai, MD, Assistant Professor of Nephrology at The Brody School of Medicine of East Carolina University in Greenville, N.C. “In addition, an educated patient is a key factor in successfully managing chronic medical conditions.”
Again, the problem is that certain web resources may not be valid, accurate, or unbiased. “These three features of a web-based medical resource are difficult to evaluate and, currently, there is no objective or consistent ‘grading’ system for such resources,” said Dr. Desai, who is himself in the midst of building a web-based teaching instrument for staff and patients called Nephrology On-Demand, which he expects to launch at the university in early 2010.
Dr. Desai calls attention to a related dilemma. “I can refer patients to more reliable websites, but those sites may not be as user-friendly as they would like.”
In addition, the proliferation of less-accurate web sites has made finding the reliable web sites more difficult, he said.
Although Dr. Desai does encourage his patients to seek information online, he reminds providers that this time saving device may not be as available to the public as they think. “Patients may access the Internet [only] once a week or month, when at a friend’s house or at the public library. There are many patients who still don’t use the Internet regularly.”
Anthony Y. Smith, MD, said he deems the Internet “very useful,” and thinks it has been good for patients but he does not specifically advise patients to use the Internet as a resource. “I guess I assume that patients have been looking on their own,” said Dr. Smith, Chief of Urology at the University of Mexico Health Sciences Center in Albuquerque.
That appears to be a safe assumption, as Dr. Smith treats a large proportion of scientists and engineers due to the proximity of his facility to several national laboratories and universities. “These folks are always very well informed,” he said. “They often come in with notebooks filled with Internet printouts.”
As for Dr. Smith himself, “I use the Internet all the time to locate information.” He regularly uses the National Comprehensive Cancer Network (www.nccn.org) guidelines to outline follow-up-treatment plans, and routinely uses the prostate cancer risk calculators and Partin nomograms available online. “For patients with kidney cancer we look at the prognostic nomograms that have been developed, and I will sometimes review a surgical video online.”
Future online plans for Dr. Smith include an initiative to hold grand-rounds conferences with a program in India using Internet-based telemedicine.
Internet not for everyone
Individuals are using the Internet not only to learn more about their ailments, but also to learn more about their health-care providers. Two years ago when Amy L. Friedman, MD, started her current job as professor of surgery and director of transplantation at State University of New York (SUNY) Upstate Medical University in Syracuse, she found that at least 10% of patients read up on her background online before meeting her.
“Most recently, I had a new transplant recipient look up my CV online and try to obtain copies of some of my articles,” Dr. Friedman told Renal & Urology News. “When he learned that the journals each charged a significant sum for the articles, he requested my assistance in collecting some of them…and he selected the most controversial ones.”
As a specialist in live-donor kidney transplantation, laparoscopic kidney donation, and pancreas transplantation and as secretary of the American Association of Kidney Patients (AAKP), Dr. Friedman appreciates a well-informed patient and the resources that make them so. “The variety of information now available through the Internet is astonishing,” she said, noting that she herself often learns new facts from the more advanced resources available.
Despite finding most online resources to be of high quality, “I do not have confidence that all patients are able to sort through such resources with recognition of the most valid and accurate information,” Dr. Friedman said. She believes, however, that the sheer volume of relevant sites helps provide patients with a relatively accurate overall set of data.
In general, Dr. Friedman refers patients to sites that are specifically designed to be patient-friendly and relatively unbiased, such as www.aakp.org, but steers them away from proprietary corporate sites.
According to Dr. Friedman, the Internet has substantially increased the breadth and quality of information available to a specific group of patients who are self-advocates and seek to learn about their health problems. “For them, the Internet is an important and effective tool, enhancing their empowerment,” she acknowledges. She notes, however, “The Internet has not directly impacted the significant proportion of patients overwhelmed by their illnesses. For these individuals, who—due to depression, limited education, or cultural ethos—are not capable of participating or choose not to participate as full partners in their own health care, growth of the Internet has not successfully drawn them out of their shells.”
Dr. Friedman contends that educating, empowering, and encouraging these individuals to engage in their own health care continues to require personal interaction between provider and patient.
As she says, “The Internet is a static, dispassionate, and impersonal resource that has not, and likely will not, effectively replace or even supplement the education of these patients who have strongly indicated a desire to receive education directly from their physician.”