It would not be an understatement to say this about Lisa M. Shulman, MD, FAAN: She has been an active member of the Academy. In addition to serving on the AAN Publications Committee, she has over the years been a member of the AAN Governmental Relations Committee, the Joint Finance Committee, the Long-Range Planning Committee, the Practice Improvement Committee, and the Health Reform Task Force.
From 2007 until 2017, she served on the AAN Board of Directors, as a member, secretary, and treasurer. She has been editor-in-chief of Brain and Life® Patient Books since 2007 and a trustee of the American Brain Foundation's Board of Directors since 2013.
She has done all of that and more while writing or editing 200 publications, including books, chapters, and peer-reviewed publications. Dr. Shulman is the Eugenia Brin Professor in Parkinson Disease and Movement Disorders at the University of Maryland School of Medicine, where she is also the Rosalyn Newman Distinguished Scholar in Parkinson Disease, and Director of the Maryland Parkinson Disease and Movement Disorders Center.
For these reasons and more, AAN President, Ralph L. Sacco, MD, MS, FAHA, FAAN, presented her with the 2018 AAN President's Award at this year's annual meeting in Los Angeles.
“Lisa has worked tirelessly to further the AAN's mission,” Dr. Sacco said in a ceremony honoring Dr. Shulman. “I know first-hand that she truly believes in the Academy mission and that we are in great shape because of her hard work.”
And to think: She might never have become a neurologist if one of her first neurology patients, while she was in medical school, hadn't cursed her out.
“I was trying to figure out which area of medicine I wanted to pursue, and this one particular patient really clinched the deal,” Dr. Shulman explained. “He unfortunately had a serious stroke resulting in expressive aphasia. Every morning on rounds, I asked him questions, to see if any speech was returning. His face turned red from effort as he fought to get even a single word out. Then suddenly, there'd be a stream of profanities and curses. And every time this happened, he began to cry, because he was ashamed to speak that way. I was at once, astonished and intrigued to peer through this window into the anatomy and function of the brain. I decided during that first week of my neurology rotation to become a neurologist — to have the privilege of not only examining the phenomenology of brain dysfunction but also simultaneously, the human response to dysfunction.”
Dr. Shulman's interest in the human response to neurological disease led her to focus much of her research on studying the relationship between the two.
“That dynamic enthralls me,” Dr. Shulman said, “particularly in the setting of chronic neurological diseases. As neurologists caring for people with chronic neurologic conditions, we simultaneously observe brain disease and the brain's attempts to compensate and adapt to these changes.”
A FOCUS ON OUTCOMES RESEARCH
Not surprisingly, many of her studies have taken a critical look at measures of mental health, disability and quality-of-life.
“Nobody starts out being interested in outcome measures, because it's so nerdy,” she said with a laugh. “But I wanted to investigate how our scientific advances make meaningful differences in patients' lives. Over 16 years ago, I started a rigorous, systematic patient database in our movement disorders center at the University of Maryland. What I learned, unexpectedly, was how flawed our outcome measures are. I was intrigued to find relatively poor correlations between neurological symptom severity and quality of life.
“For example, our research team has shown that there's discordance between patient, care partner, and clinician ratings of symptoms, disability, and quality of life. We also found that our patients are more accurate in reporting decline (worsening of symptoms) than improvement. Imagine how this can wreak havoc in clinical trials when you're investigating whether an intervention is effective. Nonetheless, I'm a strong advocate for patient-reported outcome measures. If benefits aren't perceived by our patients, what are we doing it for?”
One of her proudest achievements has been the development, as principal investigator (PI), of a group of NIH-funded measures of self-efficacy for managing chronic conditions, as part of the Patient-Reported Outcomes Measurement Information System (PROMIS). Available online at http://www.healthmeasures.net/explore-measurement-systems/promis, PROMIS was funded to develop reliable, validated measures of everything from global health to physical function, emotional distress, pain, fatigue, sexual function — and, thanks to Dr. Shulman, five measures of self-efficacy.
Before PROMIS, she said, “Clinicians had 20 different measures of depression, and you couldn't compare them at the end of the day. With PROMIS you can compare depression severity across diseases, and compare depression to other psychiatric symptoms in the same disease.”
She became interested in self-efficacy years ago, after finding that patients who lacked confidence in managing their condition have worse outcomes. “It's not enough to educate patients or to improve self-management skills,” Dr. Shulman said. “These skills need to translate to a greater sense of control. If you feel out of control, if you fear you can't manage your life, it's an enduring limitation.”
Dr. Shulman attributes the countless hours she has devoted to AAN amidst her many academic, administrative, and clinical obligations to the sense of satisfaction she gets from placing neurologists' daily struggle in a much larger context. “It lifts us up from our day-to-day concerns and allows us to dig our teeth into the larger challenges that confront our field and health care more widely. It also offers incredible opportunities to network with fellow neurologists from around North America. AAN is very dear to my heart — and I remain very much involved.”
A PARTNER AND MENTOR
Her mentor, she said, was her husband of 12 years, the late William J. Weiner, MD, FAAN, who was professor and chairman of the department of neurology at the University of Maryland School of Medicine until his death, on December 29, 2012, of multiple myeloma. He was 67 years old. [He also served on the editorial board of Neurology Today.]
“By example, he encouraged me to follow my intuition, to lean in and to relish both the big and small moments in life,” she said.
Moving forward, she is co-PI on a grant to develop innovative simple visual analytic tools for complex clinical datasets, remains on the editorial board of the newly renamed AAN patient/caregiver publication, Brain & Life (previously Neurology Now) and is on the board of the PROMIS Health Organization and the American Brain Foundation.
Clearly, next year's winner of the President's Award has a tough act to follow.