The Learning Health System: Building BRILLIANT’s Platform, Piece by Piece
The vision of the BRILLIANT program is to optimize the mobility of persons with disabilities across the lifespan, starting with Acquired brain injury. A lofty goal, that has brought together a large team of patients, caregivers, patient advocates, clinicians, managers, researchers, students, programmers, engineers, and industry partners.
A learning health system (LHS) is a long-term investment in systematic, continuous, and incremental improvements. There’s a dynamic partnership between stakeholders, research, and clinical operations at its foundation. The digital health solutions being developed within BRILLIANT will deliver interventions, collect, and evaluate data facilitating a feedback loop foundational to an LHS.
The Mayo-Portland Adaptability Inventory (MPAI) is one example of a best practice selected by our three partner health regions, CIUSSS du Centre-Sud-de-l’Île-de-Montréal, CIUSSS du Centre-Ouest-de-L’île-de-Montréal and CISSS Laval. In addition to Drs. Sara Ahmed and Aliki Thomas as co-principal investigators, members of the research team include Drs. Claudine Auger, Walter Wittich, Pascaline Kenge Talla and Michelle McKerral, and Rebecca Ataman.
The MPAI will be used by rehabilitation teams to evaluate and predict patient progress, and evaluate the effectiveness of rehabilitation programs. To achieve this, we are informed by Dr. Michelle McKerral’s work on the adoption of the MPAI by rehabilitation teams in traumatic brain injury across the province. To adapt the MPAI to stroke rehabilitation teams, we are collaborating with managers and clinicians in each health region to meaningfully and seamlessly integrate the MPAI into practice.
The COVID pandemic necessitated a paradigm shift, towards using digital and remote tools across a wide array of institutions.
One example is the rapid uptake of telehealth in the Congé Précoce Assisté (CPA) program in CIUSSS du Centre-Ouest-de-l’île-de-Montréal. CPA is a short but intensive assisted early discharge program for individuals with stroke and their caregivers. The program experienced a technological shift during the early stages of the pandemic. We interviewed the program’s coordinator about how the BRILLIANT team worked with CPA to facilitate that transition. CPA’s technological transformation served as an opportunity to conduct a number of small research projects. Currently, we are in the midst of several design thinking workshops with the CPA team and a group of clients and caregivers. The experience from this work will be extended across the other health regions working with BRILLIANT, and across the trajectory of care for ABI.
The selection of a suitable measure to evaluate mobility is critical to accurately characterize mobility limitations and is one of the key building blocks of the BRILLIANT platform. We recently published an article summarizing qualitative focus groups with both clinicians and individuals with acquired brain injury, towards creating a core set of mobility domains among individuals with acquired brain injury.
Evidence-based best practice guidelines exist for acquired neurological conditions including Stroke and Brain Injury to guide interventions across the continuum of care. However, due to the presence of many changing specialists across a care trajectory, in addition to the clients themselves and their carers, the coordination of care and consistent implementation of best practices is challenging. Multifaceted digital health platforms encompassing (administrative, assessment, patient/clinician-reported outcome measures, data from wearables, education, and resources, and an interactive goal-setting and treatment plan) as needed for specific stakeholders may be effective in the facilitation of care in alignment with evidence-based best practice guidelines.
Maxana Weiss, a PhD candidate is currently working on a systematic review to describe the components and evaluate existing digital health interventions for persons with acquired brain injury, their clinicians, and/or their carers implemented at any stage across the continuum of care and categorize and evaluate the efficacy of these technologies on outcomes based on clinically meaningful differences.
Digital health solutions do not adapt to the needs across and within individuals over time. Functionalities in digital solutions are often tested ‘one at a time’ limiting applicability across a spectrum of mobility limitations and recovery time. Adaptive trial design replaces the need for conducting several time-delayed phases of a study with one pragmatic/holistic approach. In such designs, interim analyses of the data allowing for pre-specified changes of trial conduct and patient care, increasing flexibility, efficiency, cost-effectiveness, and the possibility to adapt the trial in response to emerging circumstances. Dennis Radman, a PhD student, is currently working on the adaptation of an adaptive trial design for BRILLIANT.
The BRILLIANT research project is multifaceted, with many ongoing concurrent and planned studies. Piece by piece, the building blocks of a learning health system are starting to take shape.
