'It cannot be overstated': Mark Litwin describes the impact of Movember funding

If his career had worked out as originally planned, Mark S. Litwin would never have become a doctor. Raised in Charleston, South Carolina, where his family settled in the late 1860s, from an early age Litwin planned to go into the office furniture business with his grandfather.

But life has a habit of getting in the way of the best-laid plans. While he was studying for his undergraduate degree in economics at Duke University in the late 1970s, he was diagnosed with testicular cancer and underwent surgery by Duke’s world-class urology faculty. The experience sparked his interest in medicine.

“Fortunately, I was cured and continued my economics major but picked up science courses along the way and applied to medical school,” he says. “I phoned my grandfather and told him I was going to medical school instead of coming back to sell desks and chairs and filing cabinets. He sold the business and bought an anatomy atlas to shadow my studies.”

After graduating from medical school at Emory University in Atlanta, Litwin did his surgical residency training at Harvard’s Brigham & Women’s Hospital, where he specialised in urology. “I was drawn to urology since that’s what drew me into the medical profession to begin with,” he says.

Today, Dr. Litwin is Professor and Chair of the Department of Urology at the David Geffen School of Medicine at UCLA, where he also holds joint academic appointments in the Schools of Public Health and Nursing. His was the first joint faculty appointment in urology and public health in the US. In a long and distinguished career, he has earned numerous awards and accolades for his contributions to the field of urology. Not least among these is the American Urological Association’s Gold Cystoscope, the Urology Care Foundation’s Distinguished Mentor Award, and the 2021 Sherman M. Mellinkoff Award (the highest honor bestowed by the UCLA medical faculty).

Litwin’s academic work focuses on quality of medical care, health-related quality of life, medical outcomes, medical costs, epidemiology, and access to medical care. In 2016, he became principal investigator of Movember’s True North Global Registry (TNGR). “Leading teams from UCLA and Monash University in Australia, I helped set up the registry, advising and guiding on what should be included, and figuring out what data needed to be collected in order to improve the care of all men with early-stage prostate cancer.”

The True North Global Registry gathers information from thousands of men with localized and locally advanced prostate cancer around the world. Through questionnaires called Patient Reported Outcome Measures (PROMs), it asks men about their urinary, bowel and sexual health, their levels of pain and fatigue, the effects on their sleep, any anxiety and depression, and many other factors that impact their life after prostate cancer.

Clinicians who take part in the registry receive reports which contain robustly organised data that allow them to see how they compare with best practice.

Litwin says: “The value of the registry is that it gives us snapshots of how medical care is being delivered at a global level. That enables us to identify what’s working well and, also, what isn’t working so well so we can improve the care being delivered to men. It is tremendously useful to clinicians to find out what is happening in the real world at a population level.”

Currently, over 61,000 men from 14 countries are contributing to the True North Global Registry and Litwin is confident that the data are already having an impact.

“Registries don’t just tell us how well treatments are working outside clinical trials in different groups of patients, but they can tell us a lot about how care is being provided at a much more basic level and how that impacts outcomes for men. “For example, there is a huge variation in how regularly men are given follow-up PSA blood tests after treatment. For men who haven’t had blood tests regularly, perhaps because they live in a rural area or there are problems accessing a lab, the registry data tells us how that affects their outcomes and that might tell us how often we need to be obtaining those follow up tests.”

One of the big advantages for individual clinicians is that for the first time, they have access to benchmarked data on how their patients are doing following treatment.

“Historically, no one has asked patients in that level of detail about how they are doing and what their symptoms are; patients really like it. It also provides valuable information for clinics. It means if a man isn’t doing well, there might be tweaks we can make to his treatment to improve the care we give.

He adds: “Traditionally, clinicians work in tiny environments, doing their best to give their patients the best care possible. The Movember registry allows them to tap into the experience of hundreds of other clinicians around the world and use that to improve the quality of the care. Anecdotally, we know that the information from the True North Global Registry is already changing clinical practice.

“The changes we are talking about are often very small incremental improvements but collectively they add up to big change in the way we treat patients and improve their outcomes and quality of life.

“Looking ahead, my biggest hope for the registry is that it encourages transparency of outcomes and that clinicians can continue to learn from each other.”

“The value Movember has added in improving the care of prostate cancer patients has been immense. Movember has succeeded in funding major scientific advances in treatment to improving quality of care for men across the world. The value of this cannot be overstated.”