Discussion

Centers of excellence are institutions where experience combined with skill results in improved prospects for the patients. For rare conditions the frequency of presentation is so low that even world famous institutions do not gather much experience. The idea of a Virtual (Internet) Center of Excellence is that the experience can be collected even if the skills cannot.

Experience to date suggests that orthopaedic surgeons are slow to accept this concept. There have been no spontaneous offers of cases and no unsolicited comments.

What does occur is patient interest. Seven new patients with Gorham’s Vanishing Bone Disease have contacted me in the last 9 months. They were asked to show the site to their doctor and suggest he/she send me a case report. If these cases were all written up these 10 patients would constitute one of the largest collections of Gorham’s patients ever assembled.

Undoubtedly part of the problem is the newness of the Internet. Physicians are not yet comfortable with discussing difficult questions in a public forum. There is an understandable concern about the quality of information available, which should be met in part by the fact that this is a non-profit site edited by a qualified orthopaedic surgeon.

Lastly there is the well-known difficulty of finding sites like this – especially if you don’t know that they exist. To combat this ORCID is trying to attract publicity and has been written up in Medscape. The ORCID site is being moved to Orthogate, the Orthopaedic Portal site so it should be more “visible”

Post TB kyphoscoliosis (Courtesy of Dr. Ma Zhen-Sheng, Xi'an China)

Spreading our Wings

Ways to Increase the Collection

If orthopaedic surgeons were to agree that accumulating experience in one site on the Internet was the best option the “virtual center of excellence” would grow most strongly. However, Internet institutions have a reputation for being impermanent and it is understandable that people would be reluctant to commit support to an unproven institution. Most likely the value of the resource and its acceptance would grow together. The value would be increased by increasing the number rare conditions covered. Without further contributions this could only be done by

• Linking to other case presentations like the one illustrated above
• Searching the literature for case presentations of rare conditions and linking to abstracts
• Making the bibliography alone a resource worth visiting