It’s been over a year since the final workshop of our neurodevelopmental disorder Priority Setting Partnership (PSP). This seminal moment marks the day when patients, family members, and front-line care providers came together and reached consensus on a top 10 list of research priorities for the research community. While all PSP initiatives culminate in a final workshop, we’ve been working hard to spread the word about the top 10 and address the community’s priorities. We have reached tens of thousands of people through media coverage, presentations, and social media promotion which has been greatly amplified by our partners. Continue reading “After the top 10: bringing the community priorities to life”
Big data means many things to different people, but most agree that more data means better information leading to better decision making. Take Netflix as an example. It gathers tons of data from our watching habits and uses it to provide personalized recommendations and develop new content to improve the user experience. Healthcare is not Netflix, but can we borrow their approach to ensure that data is used more effectively to improve people’s experience? To start, we need to rethink how we collect and use research data. This is why the Ontario Brain Institute and our partners have developed our data platform called Brain-CODE.
Our health system requires that we ensure our research is relevant to the needs of patients and their families/caregivers, while empowering and supporting patients as partners. Indeed research ought to be the standard-of-care with the goal of continuous improvement. Partnerships in this virtuous cycle of improvement will generate increased knowledge and tools for self-management of health and lead to better quality evidence that reaches the community faster.
There is no question that the looming grey tsunami of the ageing population in Ontario has significant implications with regards to healthcare services. A key concept which is emerging is the opportunity to foster and maintain brain health across the lifespan where optimal performance and quality is sustained. While much focus has been on the attempts to intervene once brain disease has taken hold, progress has been slow.
Caring for someone with dementia is a long and challenging journey. Over the course of this disorder memory, cognitive function and other abilities deteriorate. Behaviour can also change over time in ways that are completely out of character for that person. For instance, the person with dementia may display aggressive behavior or get angry and act out. This can be very difficult as a caregiver and can lead to many questions. Is this typical? Is there something I can do to change this potentially risky behaviour? Getting these answers to caregivers is important for improving both care and safety in the home.
No one likes to be defined by an illness, disorder or disability – even when we are a patient. Our ‘health’ is not only based on our biology, but also by our relationships with friends and family and our ability to do the things we enjoy. Researchers Drs. Peter Rosenbaum and Jan-Willem Gorter from our cerebral palsy research program (CP-NET) wrote a concept paper explaining how holistic thinking towards health can create a better framework to approach childhood disability. This framework helps to identify the ability and potential in persons with disabilities like cerebral palsy so people can work with them the same way we should with anyone else.
Dr. Tom Mikkelsen, President and Scientific Director of the Ontario Brain Institute (OBI), reviews the accomplishments and innovations of OBI over the past 5 years, and how this lays the foundation for even greater impacts in brain research, commercialization and care in our next phase.