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Listening to the patient

Parkinson’s advocate says patients have a greater role to play in research

“Parkinson’s disease does not exist.”

It’s a surprising thing to hear coming from Ben Stecher, who was diagnosed with Parkinson’s disease, or PD, in 2013 at age 29. The patient advocate and public speaker does not mean that literally, of course. To Stecher, PD is such a diverse and complex disease that grouping all patients under one classification just makes no sense.

“If you have met with person with Parkinson’s disease, you’ve met one person with Parkinson’s disease,” he says. “There is a lot of uncertainty with getting a diagnosis. Nobody can tell you what it’s going to look like, what symptoms you’re going to experience. No one can tell you day to day how it’s going to manifest.”

Speaking to a group of researchers, patients and staff at The Neuro on March 7, Stecher was blunt about the challenges he sees in the world of PD research, and his expectations as someone waiting for better treatments, and someday, a cure.

Stecher says a gap exists between researchers and patients. He told the story of going to biotechnology firms working on drug therapies for PD, and being told he was the first person with PD to ever enter the building. While Stecher admits there is a certain advantage to remaining emotionally detached, in the end researchers need to meet the people they are trying to help.

On his website, Tomorrow Edition, Stecher writes that because PD is a slowly progressing disease, patients have time to educate themselves about the disease and become useful resources for researchers. He quotes researcher Hilal Lashuel from École Polytechnique Fédérale de Lausanne:

“I personally believe that more effective interactions and collaborations between scientists and clinicians with patients and their families is crucial to understanding the complexity of neurodegenerative diseases and accelerating the translation of research from bench to clinic to novel therapies.”

Stecher has made it his mission to bridge the gap between patients and researchers. He has visited many of the top labs focusing on PD, and has met some of the leading researchers in the field, including several at The Neuro and McGill University. He writes about what he learns on his website, which is a tool for health professionals, researchers and patients. The latest research often does not trickle down to people with PD, according to Stecher, and when it does, the description is often misleading or difficult to understand, to the point where patients do not know what to believe.

Stecher talked extensively about the problems of clinical trials, both for researchers and patients. From the patient’s perspective, clinical trials offer hope of effective treatment where none others exist. However, a person with PD would have to be very lucky to match the strict criteria needed to participate in a trial. Even if they qualify for a trial happening in their city, there is a chance they could be in the placebo group.

From a researcher’s perspective, PD clinical trials often fail because the patients are so diverse; a drug that works for one patient may not work on another. Stecher says there needs to better measurement, prediction, and subtyping of the disease.

At The Neuro, researchers are working on methods to subtype patients for better clinical trials. Yasser Iturria-Medina developed a unique “brain fingerprint” that can predict which drugs would be most effective for patients. While this research was in Alzheimer’s disease, it can be tailored to other diseases. Dr. Ron Postuma led a study that followed almost 1,300 people with REM sleep disorder, who often develop PD later in life. The study found important predictors of PD that can be used to better select patients for clinical trials.

More and more research like this will become available to the greater scientific community as The Neuro has adopted an open science policy, which will break down barriers to collaboration across institutes.

“Open science initiatives are needed very badly, more than ever,” says Stecher. “The idea that ‘this is my information and no one else’s’ is an antiquated idea. We need to be actively pursuing open science initiatives.”

Stecher was upfront about his expectations for future breakthroughs; it will take time, more time than many patients have. In the meantime, researchers and institutes must do everything in their power to clear the way forward.

“There will be no magic elixir; it will come in stages,” he says. “But the work will cumulate in a better understanding of who we are.”

To watch the full video of Ben Stecher's presentation, visit: https://www.youtube.com/watch?v=VLyv2xoa0VM

The Montreal Neurological Institute & Hospital is a McGill University research and teaching institute; delivering the highest quality of care to patients, as part of the Neuroscience Mission of the McGill University Health Centre. The Neuro is proud to be a Killam Institution, supported by the Killam Trusts.