After the top 10: bringing the community priorities to life

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”

Using A Patient-Centered Approach

 

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.

Continue reading “Using A Patient-Centered Approach”

Sharing Caregiving Strategies to Address Risky Behaviour Changes in Dementia

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.

Continue reading “Sharing Caregiving Strategies to Address Risky Behaviour Changes in Dementia”

Connecting Research Back to the Community

Ontario Brain Institute (OBI) believes connecting its research programs with patients and their advocates is critical to having relevant and high impact programs.

OBI has worked with each of its Integrated Discovery Programs (ID) to form five separate Patient Advisory Committees (PACs) that consist of advisors from various neurological health charities (e.g., Alzheimer Society of Ontario or Autism Ontario), researchers, caregivers, and patients. The purpose of these committees is to bring the patient voice to our ID Programs, promote knowledge exchange between patients, advocates, caregivers and researchers, discuss key issues for patients, and connect the research back to their communities faster. Continue reading “Connecting Research Back to the Community”

Building Networks Fundamental to Improving Health Impacts

Since the inception of Ontario Brain Institute (OBI) in 2010, we have been forging ahead with a singular mission – improve the lives of the over one million Ontarians living with a brain disorder.

OBI’s work focuses on three key areas: engaging patients in research; catalyzing evidence into practice and promoting a culture of evaluation. Through these efforts we are working alongside with communities and organizations to achieve a greater health impact than we could drive independently. Impact stories from each of the three areas help understand the rationale behind our approach and the results it has achieved thus far. Continue reading “Building Networks Fundamental to Improving Health Impacts”

Autism Across the Lifespan

What do you see when you think of autism? Up until recently, I would picture early intervention with children. But what happens once those children grow up? While early intervention and services for children are important, the needs of adults living with autism spectrum disorder (ASD) have gone somewhat unnoticed. Children with ASD grow up to be adults with ASD, and continue to have needs that require supports and services.
Continue reading “Autism Across the Lifespan”