Virtual MS Specialists are Waiting for our Questions
There is a great multiple sclerosis resource on the web that so many don't know about and it's time to share Your Virtual Multiple Sclerosis Center, where their slogan is Stop Searching, Start Learning. This is a relatively young MS website formed in 2013 and operated by Revere (Rip) Kinkel, M.D., director of the Multiple Sclerosis Center at the University of California San Diego.
Dr. Kinkel accepted my request to talk about the Virtual MS Center and instead of just a few moments of his time, we talked for almost two hours on the present and future of MS care. He is passionate about providing information to the MS community, and he gave me lots of ideas and information to share. For now I want to tell you more about the Virtual MS Center and I’ll write later on his other observations.
About Dr. Kinkel
Dr. Kinkel came to San Diego from the Boston area, where he was the director of the multiple sclerosis program at Harvard Medical School's Beth Israel Deaconess Medical Center, from 2002-2013. Prior to his time in Boston, he was the Medical Director of the Mellen Center for MS at the Cleveland Clinic (1995-2002). He also serves as the Chief Medical Officer for The Accelerated Cure Project, and I have the pleasure of working with him on the Governng Board of iConquerMS.
Expanding the use of technology
Dr. Kinkel began using the internet as a way to communicate with individual patients as well as groups of people with MS during his time in Boston. He is no stranger to understanding how to share knowledge in a broad and efficient manner and when he relocated to San Diego, the idea of doing more with this technology stayed with him. He points out that during a typical day in the clinic, a doctor might see 16-20 patients, whereas online there is no limit to the number of people who can be educated about MS with a few keystrokes. Going online to communicate with patients is the best use of limited resources, Dr. Kinkel said.
Accessing MS specialists
Your Virtual Multiple Sclerosis Center is filled with factual information on MS, links to sources that Dr. Kinkel and his peers review and approve, and much more. What makes this site unique is not only does it contain the usual information on MS and assorted links, Dr. Kinkel has assembled a large and growing group of multiple sclerosis specialists to assist with running this Virtual Center. There are now 14 doctors and other medical experts, who specialize in multiple sclerosis treatment available to answer our questions. For free.
Ask your questions
You can go to the Virtual MS Center, ask questions, and you will get a reply in a day or so from an MS expert, at no charge. It’s pretty amazing to me to have this valuable resource available to us via the internet, and it led to my conversation with Dr. Kinkel.
Where did the idea of the virtual MS Center come from?
Dr. Kinkel said he began by looking at the proliferation of MS sites on the web, and studying how they function mainly as business models, and he wanted to do something different for people with MS. At the core of his work is a recognition that MS is a chronic and complex disease that requires resources to manage all aspect of the disease and most people have problems reaching the specialized providers of MS care.
Decreasing number of MS specialists
The number of medical doctors specializing in neurology is decreasing, according to Dr. Kinkel, and even fewer doctors are going into MS care. He shared there are fewer than 4,000 specialized MS medical doctors worldwide, who prescribe the vast majority of the MS disease-modifying drugs, and that number of specialists is declining. He acknowledges the need for people with MS to have access to specialists in a convenient way but the reality is most people do not have a neurologist who specializes in multiple sclerosis in their home town and often not even close by. Visiting the virtual center gives us an additional option for information and access to the experts.
The path to creating this resource was clearly outlined by Dr. Kinkel; first, he identified the challenge they faced to provide general education and insure the reliability and veracity of the knowledge to be shared. They searched for useful links of already created content, then added their own materials as necessary. The basic site was launched in fall 2013.
Doctors and patients can learn from the Virtual Multiple Sclerosis Center
The Virtual Multiple Sclerosis Center with the chance to pose questions to the experts, opened in the spring of 2014 and now has over 17,000 registered users. Dr. Kinkel knows the number of users includes other doctors who are not MS Specialists, who come to their site for more information to use to treat their own patients. Educating doctors as well as patients is part of his mission.
Medicine is regional
When you look at the biographies of these experts, you might be surprised that they come from all over the country and most are associated with well known MS clinics, such as the Shepard Center (Atlanta, GA), Cleveland Clinic (Cleveland OH), Northwestern (Chicago, IL) and the Mandell Center for Comprehensive Multiple Sclerosis Care and Neuroscience Research (Hartford, CT). Dr. Kinkel says it is important to have people from various areas available to answer our questions because ‘medicine is regional.’ He points out that many parts to our treatment and the medical advice are specific to the area we live; treating someone with MS in Florida is different than treating someone who lives in northern climates such as Michigan.
How does is the Virtual Multiple Sclerosis Center funded?
I asked who might use the Virtual MS Center and Dr. Kinkel points out they really don’t know much about the indivduals, because they don’t collect personal information. For now they just provide information and answer questions. The Virtual Multiple Sclerosis Center does not sell data because they don’t collect any when we join. The site is supported by grants from organizations and an occasional ad from MS pharmaceutical companies. I had to search to find the small sponsors' logos placed at the bottom of one of the site’s pages. Dr. Kinkel says they are looking for venture capital to sustain and grow the site. For now, he says the site operates on his philosophy that “if you do something useful, you will find ways to support yourself,” and they rely on the goodwill and pro bono (free) work of friends, and friend of friends.
New tools to look for in the future
There are additional tools and items in development for the Virtual Multiple Sclerosis Center, and the next one likely to be added will be a place to store our MRI records. Dr. Kinkel talked about the need to keep copies of our records, much like I wrote about in MS - For the Records, and maintaining our records in a secure site is important. I asked about data security, and he says only the person posting the MRI disc copies and the company who manages the web portal, will have access to the files, and the patient will always have complete control.
The next time you have a question about MS and don’t have easy access to your own medical team, stay aware you can post your question to Dr. Kinkel and the rest of the volunteers at the Virtual MS Center. They are on call and waiting to hear from us.
wishing you well,
How do you feel before getting an MRI done?