The past couple of weeks have been exhausting for me, but at the same time, I’ve been rejuvenated with great information about living our lives with multiple sclerosis (MS).
Two weekends ago I was at MS Life 2016, an event in London for people with MS and their families, and this past weekend I attended two days of presentations (one for healthcare providers and the other for people living with MS) as part of MS Ireland’s annual patient conference.
The presenters at both of these events have given me mounds to digest regarding medical research, coping strategies, and advice on general well-being. I intend to share much of what I have learned over the coming months.
One thing that really impressed me each time it was mentioned is the new Clinic Speak website.
Putting Neurological Tests in Patients’ Hands
Clinic Speak is an ongoing project of Gavin Giovannoni, PhD, a professor of neurology at the Center for Neuroscience and Trauma, Blizard Institute, Barts and the London School of Medicine and Dentistry.
In its early stages at this point, the website helps us understand some of the tests we may be given by medical professionals and provides some tools to help us monitor our own disease progression. In the future, many more tools will be added to the site, with the goal of enabling those with MS and their families to feel more empowered and in control of their medical care.
Inviting Patients to Medical Conferences
This idea of having people living with MS evaluate their own level of disability or to have a 9-hole peg test (a test that monitors arm and hand function) in their possession might be radical, but Dr. Giovannoni has been shaking the current standard tree for quite some time. In his latest blog post, in fact, he called upon the organizers of MS medical conferences to start inviting people living with multiple sclerosis.
“Patient involvement in academic medical conferences is an important step to bring patients closer to the conversations driving the future of healthcare,” Giavannoni writes.
How bloody novel! Let’s get the people who are the benefactors (as well as often the funders) of MS research into the conversation at the level of the medical professionals.
Having Patients Rate MS Centers
Giovannoni is even in the process of developing a patient review system for MS centers that would function much like Trip Advisor does for tourists and diners. Talk about shaking up the system!
I look forward to the evolution of the Clinic Speak website, and I hope you’ll have a visit and take part if it feels right.