The past decade has seen a gradual transformation in the ways that physicians exchange ideas to enhance patient care. The Internet gave rise to e-mail, online forums, listservs, and eventually, to more elaborate Web-based programs. Two online tools — wikis and blogs — have begun to attract the attention of the medical community, including neurologists. While these Web sites lack the rigorous standards to which traditional texts and journals are held, and quality and accuracy may be compromised, they appeal to many physicians as a new creative form of expression.
BLOGS GO MAINSTREAM
Blogs — Web sites with journal-style entries in reverse chronological order — have evolved from online diaries in which people recorded events in their daily lives to professional sites created by newspapers, political pundits, and corporations. With 60 million blogs as of November 2006, and 100,000 new blogs created daily, it's not surprising that many belong to physicians. The “medical blogosphere” includes contributions by neurologists, neuroscientists, technology experts, students, nurses, patients, and others interested in sharing their ideas and opinions on neurological subjects with the world.
David Alway, MD, a neurologist in Alexandria, VA, created the blog Stroke Doc (http://strokedoc.typepad.com/stroke_doc/) in July of 2005 using a program called Typepad. “I enjoy writing and I wanted to keep up with stroke information so here was my chance to do both,” he said. The blog highlights and reviews articles on stroke that he believes would interest the public. The blog is informational, not interactive; instead of having an online conversation with others, he simply selects articles for others to read
Dr. Alway gets most of his “hits” — visits to the site — from referrals from search engines, not regular readers. “Few people are waiting for my next blog,” he observed, “but a lot of people around the world who need quick answers to stroke questions read it.”
Other neurologists view blogs as an ideal opportunity to disseminate up-to-date information to their patients. Sarasota, FL, neurologist V. Daniel Kassicieh, DO, created http://sarasotaneurology.com/ for that purpose.
“You can type the information from your computer and make it immediately available,” he said. “Since I have a wireless EMR [electronic medical records] system, I am continuously logged on to the Internet, which makes access to medical information and putting it on the blog site quite easy and expedient.”
Dr. Kassicieh provides links from his blog site to his Web site and uses both as patient information resources, directing patients to either site for additional information on a particular problem. He notes that blogs can cost less than $300 to set up, and after the initial setup, there are no additional costs; while it may cost $2,000 to $4,000 to create a Web site. Dr. Kassicieh noted, however, that setting up a blog site requires constant updating and is a continuous work-in-progress.
Neurologists who are not interested in setting up their own blog may enjoy following others. Mijail Serruya, MD, PhD, a busy intern scheduled to start his neurology residency at the University of Pennsylvania next year, likes to read Mind Hacks (www.mindhacks.com), Neurodudes (www.neurodudes.com), and some of the BBC science blogs.
After reading a blog a few times it is easy to get a sense of the blogger's interests, he said, and checking back provides the opportunity to pick up interesting articles that would not have been found otherwise. He added, “Blogs function as a sort of informal, non-peer-reviewed JournalWatch equivalent, and of course, they're free and interactive.”
Whereas blogs are static, temporal, and characterized by single source monologues and community responses, wikis are Web sites that allow visitors to edit, add, or remove content. They enable multiple authors to create collaborative documents expressing ideas as relationships between pages, creating a network of topics. The most famous wiki is Wikipedia, the online encyclopedia. It has well over 2.9 million authors — Wikipedians — who have generated over five million articles (1.5 million in English) at a rate of 200,000 edits per day (as of November 2006).
And just as there are neurologist bloggers, there are neurologist wiki users such as Gregory L. Pittman, MD, of Louisville, KY. “There is a certain permanence intended with the pages of a wiki; a page is created, added to, and edited to improve and polish it,” he said. “Blogs are more of a linear time-based work, something like a diary, a ship's log, or running commentary. They can be edited, but a blogger is more likely to simply make a new entry to modify what was said in a previous entry.”
Dr. Pittman advises that the easiest way to contribute to a wiki is to go to Wikipedia, http://meta.wikimedia.org/wiki/MediaWiki_User's_Guide, find pages that need some help, and click the edit tab on various pages to see how things are done. “A neurologist can easily enough find things to quibble about in a typical Wikipedia entry on a neurologic disease, yet it contains an amazing amount of breadth and depth,” he said.
“One can, for example, enter ‘Charcot’ in the search tool, then link from there to an amazing array of articles about him, the Salpêtrière, and various diseases he described,” he explained. In a recent talk on Guillain-Barré Syndrome (GBS) for his rehab staff, Dr. Pittman used Wikipedia because it was a robust source of historical and biographical info (and pictures) for GBS, Guillain, Barré, Strohl, and Landry.
How would a wiki be helpful for neurology? Dr. Pittman views it as a way to stay current. “I think we're still stuck in the mindset of the traditional printed monographs and compendiums, which are becoming increasingly expensive, yet at the same time seem to become outdated rapidly.” Having completed a neuromuscular disease fellowship, he pointed out that keeping up with the molecular genetics of neuromuscular diseases is challenging, partly because the data coming out are scattered all over the place. “A neurology wiki might come closer to being up to date than anything so far,” he reflected.
A sophisticated neurology wiki that helps doctors make clinical decisions is exactly what child neurologist Michael M. Segal, MD, PhD, had in mind when he created SimulConsult, www.simulconsult.com. SimulConsult users input data into software that helps them arrive at a differential diagnosis of neurological syndromes.
David J. Michelson, MD, assistant professor of pediatrics in the division of child neurology at Loma Linda University School of Medicine, said he has been amazed by SimulConsult's ability to generate perfect matches to single conditions.
“The software is very user-friendly and intuitive,” he said. “It is designed to highlight metabolic and genetic syndromes which often only differ by certain specific findings.” For example, the entries for a 27-year-old man with a metabolic myopathy, who had seen more than a dozen neurologists and neuromuscular specialists before coming to the Muscular Dystrophy Association clinic, produced a perfect match for CPT II deficiency. “My nurses told me that he and his mother were hugging and crying tears of joy after I left the room,” said Dr. Michelson.
In another case, a 7-year-old boy with a neurodegenerative disorder with dementia, cerebellar atrophy, and spastic quadriplegia — despite EMG and muscle biopsy results suggesting denervation — was a perfect match for neuroaxonal dystrophy. He quipped, “Steven Ashwal made that diagnosis within five seconds of hearing me describe the child, which just proves that I need the program a lot more than he does.”
The tool has matured and increased in accuracy through a collaborative effort of many neurologists. In contrast to Wikipedia, all submissions to the SimulConsult database are reviewed by doctors following the existing norms for medical journals. Dr. Segal contends that wikis are more descriptive, providing details about findings in diseases, than prescriptive, providing rules tailored for particular clinical situations. The descriptive information available through wikis is a good way to aggregate evidence-based medicine, Dr. Segal added.
“Our software addresses 1,400 inherited and congenital neurological diseases, and uses over 24,000 data points,” said Dr. Segal. “Since there are no clinical rules, adding new material is straightforward and can be done merely by changing individual data points.”
SimulConsult also created a blog format for clinical cases in which medical terms from a case narrative are hyperlinked into the diagnostic software (www.simulconsult.com/cases/). Physicians can click into the software with all patient findings already entered. The cases blog format is being developed together with the Child Neurology Society for residents and other doctors in practice who want to keep their skills sharp and up-to-date with the latest advances in diagnostic knowledge.
The ability to click into information tools from narratives about patients has the potential for much wider application. “In essence, a medical chart is a privacy-protected blog,” Dr. Segal pointed out. If data such as labs, tests, history, and physical exam findings can be filtered into software, physicians can be easily assisted in medical decision-making.
“The cases blog illustrates the potential of a neurology wiki,” Dr. Segal continued. “As similar tools become an integral part of practice, opportunities for collecting the wisdom of the neurology community in these ways will increase.”