Grant: Project Grant

When someone experiences a stroke, traumatic brain injury, or spinal cord injury-rehabilitation is essential to help them regain function and improve their quality of life. However, there are still many unknowns about the most personalized rehabilitation treatments for people, meaning that some people may not be attaining their most optimal recovery. A Learning Health System (LHS) can improve rehabilitation by continuously collecting and analyzing data to guide more personalized treatment decisions. However, a major challenge in creating an LHS for neurorehabilitation is figuring out how to measure patient progress. Traditional healthcare measures, like survival rates or hospital stays, do not capture key rehabilitation goals, such as movement, communication, or daily participation. While tools exist to measure these, they are not used consistently. To build an effective LHS, we need a standardized way to measure rehabilitation outcomes. The ALIGN project addresses this by working with patients, families, healthcare providers, and researchers to develop a patient-centered measurement (PCM) framework for neurorehabilitation. First, the team will review existing measurement tools and collaborate with people with lived experience and clinicians to agree on a core set of outcome measures. Next, these measures will be tested in inpatient and outpatient rehabilitation settings, with improvements made based on feedback from patients and providers. ALIGN brings together experts in healthcare measurement, patient engagement, neurorehabilitation, and health policy. Patient partners ensure the project remains relevant to those it aims to help. By the end, ALIGN will produce a measurement framework and implementation toolkit. The next step will be expanding its use across neurorehabilitation programs to generate valuable data which can be used to improving services and outcomes for people with stroke, traumatic brain injury, or spinal cord injury.