Natalie asks Barry, what should people be looking out for at ECTRIMS 2016? What would you really advise people to look out for, what they can really expect to take away and what kind of the crux of the exhibition will be?
Well, I think again, the highlights on the new progressive, options for progressive disease. In the US, and we’ll have to see where it goes in the EU, we’re hopefully having a new treatment for primary progressive disease coming out later this year, so hopefully we’ll hear some more news on ocrelizumab. So one of my favourite things to do is actually blog, so blog and live tweet, @drbarrysinger, so I like to keep people aware of what’s going on at the congress. So while it’s going on live to really get that information out, because not only does it provide hope but it also gives you knowledge. I think knowledge is really very empowering for people with MS. And one of the other things that I’ve been working on just yesterday is a project called Navigating MS, and we’re working on that communication. So how do people living with MS communicate their needs and their interests and their ability to accept risk, or not want risk from their medications, how you communicate that, you only have a limited time in your office visit and the doctors don’t necessarily listen all the time and have their own agenda, you know, I’ve got to examine you, here’s your MRI, but not really listening to the needs of the person walking in and where they’re coming from; their cultural background, their ability to accept medications. So I think we’re working on that dialogue, so I think that’s really exciting.
It’s really interesting that you touched on the point about speaking to the doctors and neurologists about that because you do only get a limited amount of time, so there’s been discussions about how this can be improved, what other avenues can be looked at, etc, so what other things we can do to improve people’s status with regards to work and employment, so on and so forth. So it’s really exciting to hear that these are things that you all are discussing already behind the scenes, you know.
Shift MS is involved, because George has been part of our committee, so we are working with patient organisations and some of the patient organisations of people living with MS are representing that patient organisation, as well as healthcare providers, including nurses and doctors. So it’s really about improving that dialogue so that we’re all on the same page, so we’re really serving our patients the best and as a patient that you’re getting what you need and that the doctor understands where you’re coming from and what your concerns are.
Dr. Barry Singer MD is Head of the MS Center for Innovations in Care at Missouri Baptist Medical Center and has been for 10 years. Previously, Dr. Singer worked with Barnes-Jewish Hospital. He is currently working on clinical trials to study new potential MS treatment. He was a recipient of the 2008 pathlighter award.