You’ve been introduced to five members of the PatientsLikeMe Team of Advisors so far: Karla, Emilie, Becky, Lisa and Dana.
This month, meet Deb, a freelance medical writer who was diagnosed with multiple sclerosis (MS) in 2009. Learn about her journey and what being a part of the Team of Advisors means to her.
About Deb (aka ruby1357):
Deb has spent most of her professional life as a freelance medical writer and editor. Over the years, she has worked with many health and medical organizations. Currently she works in cardiac surgery research for a major hospital system in the Washington, DC, metropolitan area. Deb’s primary professional interest has always been patient education. She believes that “knowledge is power”―that clear and accurate information can ease patients’ fear and uncertainty when faced with a serious diagnosis, that anyone is capable of understanding even the most complex research if it is presented appropriately, and that information doesn’t have to be dumbed down for patients to understand it.
Deb was diagnosed with MS in 2009. Her passion is dressage, and she credits her horse, Gwen, and riding as the most important and effective “treatments” for her MS symptoms.
Deb on patient centeredness:
“I feel fortunate that, because of my work, I have been able to see clinical research from the perspective of both the patient and the researcher. I have worked with and for many organizations, researchers, and physicians over the course of my career, and I have found that, ironically, the patients themselves are often invisible in the research process. If patients are thought of as “cases” rather than as real people, and if patients don’t understand what is being done and why, then the research effort has lost what should be its central purpose.
The story of how I came to be diagnosed with MS illustrates some important points that I feel are related to patient centeredness and the work of PatientsLikeMe’s Team of Advisors.
On opening day of show season in 2009, I found for some reason that I couldn’t ride very well. Everything was off, and my body felt very strange. Embarrassingly, that day I received the lowest scores of my riding career! Days later, I found myself in the office of a neurologist, who off-handedly ran down a laundry list of differential diagnoses, ranging from a pinched nerve or Lyme disease (the latter is common among horse people) to Parkinson’s or multiple sclerosis. After weeks of anxiety and a multitude of tests, the same doctor casually informed me over the phone that “it looks like you have MS.”
At age 52, I couldn’t believe my ears, especially since my ex-husband had been diagnosed with MS many years before, very early in the course of our marriage. Back then, there wasn’t an MRI machine around every corner. It took 5 years after his first attack for him to be diagnosed. At that time, I was working for a major medical specialty organization, so I went to the library (no one had computers yet) and found everything I could about MS. Then we both started reading. At a time when the official slogan of the MS Society was “MS: The Crippler of Young Adults,” we learned that having MS didn’t mean you would necessarily end up in a wheelchair. The information we gathered reassured us. He went on to lead a totally normal life during the 10 years of our marriage.
I see these two incidents as related in very important ways. Having accurate information about MS kept my ex-husband and me from fear and despair. And the casual manner of the neurologist who gave me the MS diagnosis served as a perfect example of how NOT to interact with patients. Both incidents relate to how important it is for both researchers (who publish their results, which eventually may make it into patient information materials) and clinicians (who should take into account how it feels to be on the other end of the conversation) to keep the “end user”―the patient―at the forefront of everything they do.”
Deb on being part of the Team of Advisors:
“Being a part of the ToA has been a profoundly rewarding experience. I have made friends that I know I will keep once our terms are over. Like my colleagues on the ToA, I am deeply grateful to have the opportunity to be heard, without condescension, as a person experiencing a disease and its effects, and to have an opportunity to have a say in how research is conducted.
PatientsLikeMe has as its mission nothing less than changing how research is conducted, and I am excited and honored to be even a small part of that. There is a long-standing divide between the researchers who conduct clinical trials and the practitioners who provide health care to patients. Too often, patients are lost in the middle. The research/clinical divide has long needed a third party to bridge the gap. That third party is the patients themselves. By starting at this common ground—the patients whose lives are affected by both research and clinical practice—PatientsLikeMe is making important strides in bringing together these traditionally divided camps for a unified purpose: to better the health and quality of life of real people.”
Deb on MS research:
“Like my fellow Advisors and PatientsLikeMe itself, I believe that much can be learned from patients’ experiences, and this information should be used to design research studies. My own experience serves as an example of this.
In the weeks and months after my initial diagnosis, I found that movement was vitally important. MS is, after all, a movement disorder. My fellow horsewomen rallied to my side, lending me their quiet mounts to ride until my symptoms abated and I could safely ride my own high-spirited (to put it politely!) mare again. Those women―and the horses themselves―kept me moving.
When my current neurologist first met me, she told me that, having looked at my MRIs before our visit, she was amazed at how well I was doing. Although I don’t have scientific evidence for it, my belief is that my riding has kept the disease from progressing further than it has.
This is an example of how patients’ experiences can inform research. To date there are maybe a dozen studies on the effects of sustained physical exercise on MS disease progression. There need to be more clinical trials in this area, as well as in other chronic conditions, that are based on patients’ actual experiences. Those experiences―though anecdotal―are a treasure trove of possible study questions for clinical research.”
More about the 2014 Team of Advisors
They’re a group of 14 PatientsLikeMe members who will give feedback on research initiatives and create new standards that will help all researchers understand how to better engage with patients like them. They’ve already met one another in person, and over the next 12 months, will give feedback to our own PatientsLikeMe Research Team. They’ll also be working together to develop and publish a guide that outlines standards for how researchers can meaningfully engage with patients throughout the entire research process.
So where did we find our 2014 Team? We posted an open call for applications in the forums, and were blown away by the response! The Team includes veterans, nurses, social workers, academics and advocates; all living with different conditions.
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