Pictured: Dr. Anthony Trabouslee. Image credit: Paul Joseph/UBC.
When Sharon Roman began writing from a patient’s perspective for the British Medical Journal (BMJ), her reasoning was that if her experience resonated with just one physician and resulted in an improved experience for just one patient, her effort would be worth it. Newly appointed to the patient editorial board for the Journal of Neurology, Neurosurgery & Psychiatry (JNNP, an imprint of the BMJ), it would seem that her experience has resonated well beyond that single, hypothetical patient.
In her first editorial for the JNNP, Roman describes the role of the patient participant in a clinical trial, and how individuals involved in research are de-identified. The nature of clinical trials means that identities are anonymized and individual data is protected; Roman argues, however, that remaining invisible to healthcare isn’t always for the greater good, and that a person’s experience can be as valuable as the data they generate.
“Twenty years of living with multiple sclerosis and comorbidities has given me tremendous experience as a patient,” said Roman. “My role on the Patient Editorial Board for is not just to humanize a data point; it’s also to foster practices to improve patient experiences.”
“I’ve known Sharon for many years and she has been very invested in how care is provided and research is conducted at our Centre,” said Dr. Anthony Traboulsee. “I have used many of her BMJ articles in teaching medical students about patient perspectives and empathy.”
Empathy, Roman argues, does not benefit patients alone.
“Empathy is more than simply relating to someone; it’s about putting yourself in another’s position,” infers Roman in her first column for the JNNP. “In healthcare and in life, there can be no empathy without shared perspective.”
Research shows that the value of empathy in the doctor-patient relationship offers a more satisfying experience and reduced burnout for physicians. While a clinician-scientist has specific expertise, science is limited in scope and no amount of research or training can equate to a person’s lived experience; how can a physician help without understanding what the patient really needs? For Roman, it’s possibly the most important question.
“One of the best things I ever heard someone say was ‘tell me how I can help you,’” she said. For Roman, and many individuals navigating the healthcare system with chronic diseases, treatment is about more than writing prescriptions or offering a diagnosis. “Being effective requires dialogue, perspective, and human connection.”
In the editorial that launched the Patient Editorial Board at the JNNP, the authors write that “evidence is growing to support the role of multidisciplinary care for people with progressive neurological disease—to provide multidimensional assessment, symptom management, and care-planning allowing patients to better live with disease.”
At the Djavad Mowafaghian Centre for Brain Health (DMCBH), a brain wellness initiative is in the early stages under the leadership of Dr. Silke Cresswell. The goal of that project, which Dr. Traboulsee is also a part of, is to establish clinically relevant lifestyle approaches to complement medical treatment in the clinics at DMCBH. Wellness comprises a variety of aspects, including exercise, enjoyment and performance of music, visual and performing art, mindfulness, healthy nutrition and social connections. The project is currently in the planning phase, and a patient advisory board will provide crucial input to guide the development and running of the program.
Efforts such as the Brain Wellness program at DMCBH reflect a change in how clinicians engage with patients; it is not enough to treat the disease, and effective care means looking beyond a set of symptoms in order to see the whole person.
Beyond DMCBH, there is a growing desire among clinicians and researchers for inclusion of the patient experience, and journals like JNNP establishing patient editorial boards are part of a progressive approach to patient inclusion in academic publishing.
“I speak for myself when I speak about patient inclusion,” says Roman. “The doctor-patient relationship is a partnership, and partnerships are unique. These relationships matter, and they can only grow through meaningful dialogue. Nobody has the same lived experience, but I hope that by sharing mine, I can engage directly with a community of researchers, clinicians, and other healthcare providers who are invested in improving the lives of individuals with chronic diseases like MS more effectively.”