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.
Researchers are driven by the need to answer questions and solve problems. Those with lived experience have the unique perspective of the challenges and needs associated with living or caring for someone with a brain disorder. Engaging patients as partners in research provides them a platform to voice their needs, shape research, and helps connect the research back to their communities. One example of how we engage the community is to work together and set research priorities that matter to them. Recently, OBI and its POND program partnered with the James Lind Alliance (JLA) to learn what matters to people living with or caring for someone with a neurodevelopmental disorder.
OBI, POND and the JLA, in partnership with community advocacy and support organizations, such as Holland Bloorview, Autism Ontario, Community Living Toronto, Children’s Hospital London Health Sciences Centre and The Centre for Addition and Mental Health, captured research questions from people living with a neurodevelopmental disorder. A total of 1200 questions were collected, consolidated, prioritized and ultimately distilled into a top 10 list of research priorities, decided together by patients, carers, advocates, and health/education professionals. These top 10 research priorities serve as a powerful and an important tool to spur patient-oriented research.
Making knowledge matter, OBI and CAN-BIND (OBI’s depression research program) partnered with an Ontario First Nation community in co-developing a suicide prevention program. By offering resources and clinical expertise to staff, CAN-BIND helped run a four-part community-based youth event series to encourage wellness, life promotion, and resiliency. The collaboration has helped develop a sense of personal identity, enhance traditional knowledge and offer a positive outlook towards traditional values and social roles, decreasing the risk of self-harm and suicidal ideation. By connecting stakeholders we helped find a common ground and encouraged them to participate, discuss and take ownership of the health outcomes they wish to achieve for themselves.
To advance health impact it was important that clinicians and practitioners convert research knowledge into action for the benefit of the patient community. As one of the first organizations to invest in Primary Care Collaborative Memory Clinics, we supported the training of 172 health care providers from 33 primary care based clinics across Ontario to improve the care of people with dementia in their local communities. This knowledge-to-action approach to health care supported by these memory clinics has now been scaled up through follow-on support by Health Quality Ontario, The Council of Academic Hospitals of Ontario and The Adopting Research To Improve Care (ARTIC). The training resulted in lower wait times; 89% of patients were seen within three months, with an average response time of 1.5 months. This is down from the usual 6-12 month wait time. More people were able to be treated by their primary care doctor, with only 10% needing a referral to a specialist for care. Our investment in this initiative has led to a profound improvement in the quality of care for Ontarians with dementia.
Similarly, evidence indicates that surgery is the best option for certain patients with drug-resistant epilepsy. However, a study by EpLink researcher Dr. Jorge Burneo indicated that fewer than 2% of eligible Ontario patients undergo the procedure. In response, the Ontario government established the Epilepsy Implementation Task Force (EITF) to develop guidelines for epilepsy care, including surgery. OBI’s EpLink program has worked together with the EITF to create lay versions of the guidelines to facilitate their adoption and improve awareness of appropriate epilepsy care in Ontario.
Another example of how OBI is working to improve the quality of care is seen through our Evaluation Support Program, which matches evaluation specialists with not-for-profit organizations. To date, participants have included Dancing with Parkinson’s, Epilepsy Support Centre, Suvien, ThreeToBe, N’Mninoeyaa Aboriginal Health Access Centre, and the Alzheimer’s Society of Ontario. A follow-up evaluation of each of these seven pilot projects shows that over 600 people were impacted in the first six months; enhancing care and helping organizations offer robust and efficient services.
By concentrating on the three key areas of patient engagement, adoption of evidence and a culture of evaluation for community programs, we are helping ensure that high quality services and care are available to Ontarians living with a brain disorder. The impacts are palpable. To date, we have organized 12 public talks attended by over 4500 people and over 280,000 people have interacted with OBI information. We have also conducted 100+ patient-informed research activities; supported 11 community-based programs; engaged 21 patient groups in OBI research, offering insight into future research priorities, and most importantly researchers affiliated with OBI offered counsel on 34 health policies – a reflection of the support we have gathered over the years and our collective resolve to improve brain health.