Oftentimes, patients are left out of the assessment and treatment of their conditions. A new platform at The Neuro seeks to make patients active participants in their own care, while also advancing patient-centred research, by providing data patients and their caregivers can use to monitor and reassess treatments and outcomes.
The Brain Health Outcomes Platform, led by Dr. Lesley Fellows at The Neuro and researcher Nancy Mayo from McGill University, is a set of online questionnaires and cognitive tests, the results of which are shared with both the patient, his or her physician, and researchers to better understand how neurological disorders affect many aspects of everyday function and quality of life.
This information will be used to build a brain health profile for the patient, which patients can use to monitor changes over time, and define their own care priorities. For example, it may help a patient realize that her sleep has gotten worse over time, inspiring her to seek help. BHOP could also help doctors recognize changes in specific abilities, allowing them to offer solutions.
From a research point of view, BHOP will provide valuable insights into the impact of neurological disorders on patients’ cognitive, psychological and physical health, allowing them to develop better strategies to manage their symptoms and maintain their quality of life. BHOP data is stored on a secure server without personal identifying information to protect privacy.
Ultimately, the plan is to share BHOP data with scientists around the world through Open Science, where qualified researchers can use it as part of their studies. A few minutes answering questions on the BHOP secure online portal will help make sure the patient’s perspective is central in research on neurological disorders.
“People living with neurological illnesses should be at the centre of everything we do at The Neuro,” says. Dr. Fellows. “BHOP will allow our patients to become our partners in improving clinical care for themselves and others, and in advancing brain health research.”
Patients, clinicians and researchers interested in participating in BHOP can email the administrator at bhop.mni [at] mcgill.ca